2018 DIEP Surgery
Please PM me if you'd like to be added to our surgery list or if something needs to be edited. Sometimes it can get lost in the thread as fast as it moves. Thanks!!
I'd like to welcome future DIEP ladies and thank you for sharing your journey, and also thank past DIEP ladies who are so graciously sharing their experience and advice! We are all learning so much from each other!
Update: So it looks like we've got a good thread going, if you've had DIEP recently or not so recently we'd love to hear from you. Support and positivity are very much appreciated!! I'll try to stay on top of updating the dates and such but help me out if I need to fix or update anything:)
Hello, just wondering if we should start a new thread for 2018 DIEP. I've seen the January 2018 Surgery thread and the 2017 DIEP which are great so I'm not sure if it's needed so let's see. March 2nd is my Bilateral DIEP Surgery date.
——-Phase 1——-
Fme Feb 2
Lifewins Feb 5
2002chickadee Feb 5
Newusernam3 Feb 12
MommaGin Feb 14❤️
Dr Boutros, Houston TX
Casun19 Feb 19
Mitzi458 Feb 21
Dr Tseng UCLA
bella2013 Feb 22
Baptist MD Anderson Jacksonville
Help3 Feb 23
Dr LeFaivre & Dr Robinson Charlotte NC
TWills63763 March 2
Dr Klein & Dr Lee
Orlando Health/UF Health Cancer Center
Opt4Life March 7
SadieSue09 March 12
Scorpiogirl March 13
Kahnartist March 16
Outdoorsy March 19
Dr Levine Dr Allen NY
Hydrangia March
Dr Marke Burke Dr Thom Loree
Buffalo NY
Just Me2 March 2
Staceysjourney April 9
Marg2018 April 10
CyberCathy April 11
Dr Momeni
Stanford CA
Jsm22 April 17
ScubaMom24 April 30
Beth Israel Deaconess Boston
Lulabella May
Dr Charles Tseng UCLA
Finn21 May 2
Dr Sean Boutros
Shaleae May 10
Dawnann May 15
NOLA
Primrose24 May 17
Brigham & Women's Boston
Dr Pomahac
Parachutes May 30
Teaberry11 June 4
CarolDee June 4
Cev20 June 26
Justkeepmoving June 29
Leatherette July 2
Dr Beschilian
Polyclinic Seattle
OCDAmy July 6
Washington University/Siteman Cancer Center
KLWilliams22 July 9
Dr Bajaj
St Anthony's OKC
carmstr835 July 10
Dr Pelletier Dr Lui
CTCA Zion
Lanne2389 July 17
Carmen71 July 18
Elijahgirl August 7
Dr Wang & Dr Jatoi
University Health San Antonio TX
Mustlovepoodles August 17
Dr Wise
Nola
SoniaL August 22
Dr Robinson &Dr Korn
Charlotte NC
MCOlivia Sept 5
BethNY3 Sept 6
Shellybeans Sept 10
Dr Lee & Dr Klein
Orlando Health/UF Cancer Center
LPH Oct 1
Moonie_tricks Nov 6
Dr Crisera UCL
Cjzach Nov 12
Ibethewife Nov 26
Atly Oct 1
Kickin-cancersbutt-2014 Oct 23
Mncteach Nov 6
Pharmdgirl7 Nov 6
NOLA Dr Trahan
Frogdog12 Nov 26
tkmadonna Nov 30
Ceecee10 Dec 3
Deweydell Dec 6
Middlemore Hospital Auckland New Zealand
———2019———
Vslush Feb 22
Dlpaquette March 11
Simbobby March 12
HappyGirl1631 March 26
University of Kansas Dr Butterworth
Flynn April 1
Vanderbil
Stephanie980 April 17
—-Phase 2—-
Mitzi458 May 10
Bella2013 July 20
Trishyla July 26
Dawnann August 24
Nola
Ishallovercome August 29
TWills August 30
Dr Klein
Orlando Health/UF Cancer Center
Casun19 August 31
Teaberry11 Sept 11
Cev20 Sept 18
Carmstr835 Oct 16
——Phase 3——
TWills Jan 18 2019 Fat Transfer
Dr Klein
Orlando Health/UF Cancer Center
——Phase 4——-
Twills May 10 2019 Fat Transfer
Dr Klein
Orlando Health/UF Cancer Center
Comments
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Twills: re: undies: I came home from the hospital after DIEP without drains. I chose commando. Had a bunch of leggings and running tights, just wore a different pair each day. None of my panties were gonna work out. No way.
I had a "DELAY of flap" surgery two weeks before the DIEP and had one drain for those 2 weeks, before the huge ab incision. During that time, I had a couple thongs with a very wide stretchy lace front that hit the perfect spot to hold the drain again my skin, then a pair of snug leggings on top of that.
I used a lanyard around my neck and under one arm and safety pinned the drain grenade to that.
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Cindy Anne- The docs at NOLA will be able to tell you what they recommend from the photos you will send them. A stack is possible as well as potentially just a DIEP or just an SGAP. See what they say.
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Hi Ladies,
I'm joining this thread as I will just be finishing up chemo next Monday and my surgery has now been scheduled.
I'm pretty sure I want to go with diep flap but I will need rads after surgery so I have time to make my final decision. They will put in tissue expanders at the time of mastectomy and then later I can go implants or diep.
How did you make your decision?
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Hi All
Had my surgery on Tuesday and am disappointed to let you know I didn't have the DIEP as scheduled because I had 1 of 4 nodes come back positive during the sentinel node biopsy. I woke up with tissue expanders and a compression bra. Tuesday night was really difficult emotionally and I was anxious to talk to the doctors myself instead of through the little that was told to my family. Wednesday didn't bring much more information other than let's wait and see the pathology report which is expected in a week. I did get to come home on Wednesday.
So far I have had a little problem with my right drain not holding suction and my left drain continually blocking at the entrance to my incision. The PA had me come back in on Thursday and was able to clear the blockage in the left and even after further investigation by the PA and doctor can't figure out why the right is not holding suction. They did bolster it at my incision and told me to keep checking and squeezing the suction back into it but were reluctant to remove it because the pain medicine ball would have to be removed with it.. they also showed us how to get this darn compression bra on easier and that in itself was worth the drive in to their office! We will head back in Monday for them to check and possibly remove the right drain.
Friday I noticed more swelling in my left side (cancer side) called doc but he feels it's a normal condition reminding me that even though I had a BMX they are 2 different surgeries because of the lymph node removal. I also finally received a call from the Home Care nurse who will be coming by later this morning (Saturday).
Pain is very manageable but have to be careful not to overdo the exercises because it has been causing a lot of discomfort at the drain entrances.
I'm hoping to get through whatever treatment may need to be planned and get back to the DIEP surgery by the end of this year. The nurse navigator and I spoke for an hour yesterday ( another wonderful resource!! ) and she is helping keep track of my goals through this diagnosis and treatment!
Love getting back to reading all of your stories and wish for everyone's continued improvements and hopeful for Casun, Mitzi, Bella and Help3 as you all prepare for your surgery this week. ❤️
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Teaberry11, I am so sorry to hear that your surgery didn’t go as planned. This journey is an emotional roller coaster ride. I too have an “angel” breast cancer navigator who keeps me focused on my goal: to be cancer free.
This is a temporary setback. You will be cancer free and you will have beautiful breasts again. Heal well from this surgery and then get back up and kick this cancer to the curb.
I will be thinking of you as you recover.
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Teaberry11, it sounds like you are handling the situation incredibly well and have a great team around you. Your positive attitude is shining through and will serve you well. Sending healing thoughts.
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Yes LMichele, that’s the plan, to use an implant if I’m not big enough. It wouldn’t be done at the time of my DIEP though. He said it would be later after we see what I have once I’m healed. Thank for the undie and drain suggestions:)
So sorry Teaberry11, I know that was a disappointment to wake up and not have what you were planning to have. I woke up from my BMX flat, my PS doesn’t place TEs if you’ll need radiation and I had one node involved as well. So I get it. You’ll just have more time to prepare:) Hope you’re healing well and comfortable.
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Hi Ladies!
I've been lurking around the different boards here since my diagnoses at the end of January and I've finally decided to jump in and participate. I'm scheduled for a right mastectomy (for now) with immediate DIEP reconstruction on March 12th. I'm waiting on some genetic testing results before deciding if I want to opt for BMX. My mom had breast cancer 30 years ago when she was 39, but its hard to say if its a strong family history with just the one member. Neither my mom nor my dad had any sisters and we can't find anyone else in the extended family with a history of breast or ovarian cancer. Not so helpful when making life altering decisions
![:\](https://community.breastcancer.org/resources/emoji/confused.png ":\")
As March moves closer and closer, I'm getting nervous, but reading through this thread along with others is helping me prepare and also helping me identify questions for my team as the date gets closer. I just want this stuff out of me and I want to move on to post-surgical treatment phase, whatever that may be. I will certainly go on to Tamoxifen, but won't know about chemo until after surgery when they biopsy the sentinel nodes.
This is the first surgery I've had in my life so I've got a lot of anxiety wrapped around the whole process, but seeing everyone's posts here is helping to calm my nerves.
I will get through this. We all will.
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Welcome SadieSue09!
You will get through this! You’ll learn a lot here and hopefully getting some answers and support here will calm your nerves:)
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Sending healing thoughts to Casun19, her surgery was today.
Good luck Mitzi458, Bella2013 and Help3! We’ll all be thinking about you this weekand sending healing thoughts to you as well!
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Hi Ladies!
I found out today there is a major change in the staging criteria. No longer is lymph node involvement an automatic Stage II minimum they are now using the old anatomic TNM staging in combination with prognostic staging including hormone receptors and HER2 status — here is a link to read up if interested !
http://onlinelibrary.wiley.com/doi/10.3322/caac.21393/full
This all comes down to after my pathology I'm a Stage IB 😊. Tissue has been sent for a Mammaprint and I am meeting with MO later this week.. really good day! With any luck and a low mammoprint score I may be able to have my DIEP this summer!
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Hey, sorry I didn’t get over here sooner-so nice that you check in on everyone, Twills! I think my TE placement went fine. I have had pain and used my opiods a few days, but did not use any pain meds today. The bruising is pretty spectacular-from my back to my “formerly known as cleavage”. I have one corner of the crescent that is poking forward, and that hurts, but seems to happen to people.
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Good to hear from you Leatherette! TEs are something else for sure. I was very uncomfortable, mostly on one side, at the incision line for the first 5 weeks or so and then it just stopped one day and they were totally comfortable at that. Well, as comfortable as they can be that is. I haven’t hated them as much as most seem to. Happy healing to you! “Formerly known as cleavage” that’s funny. I hope I get something like my “formerly known as cleavage” area back. Lol
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Finally got my pre-op date, I’ll go next Tuesday. That’s only 3 days before surgery but they were able to schedule all of my appts that day since I have a 4+ hour round trip drive. I’ll have three separate appts, one is Pre Admissions testing, I assume that’s some blood work and paperwork. I’ll go to the surgeons office after that and they said they would make sure I get to see my surgeon while I’m there for any last minute questions, I definetly have some. Then I’ll go to a PT/OT appt, I assume they will teach me how to go about daily life after my surgery, teach me to use a walker and such. They did tell me that my husband could stay with me every night after surgery, no ICU since this hospital has a unit set up for these type of surgeries. They did say that it would be be 80 degrees in the room the first night, yikes, I was wondering about that since I haveheard that they have to keep you very warm for a time. 😱
I’ll see my original surgeon that did my BMX today, I think for the last time. I saw my RO two weeks ago for the last time, feels great to move along and get rid of some of these Dr’s!
Hope everyone is healing well or feeling prepared for their surgeries!!
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welcome Simbobby, somehow I missed your post! Congrats on finishing Chemo!! Yay
And yes, you do have some time to think about what would be best for you. Just do some research and your Drs can also help with letting you know what would work best. Just make sure you see Drs that do DIEP when asking questions about it, I found that surgeons that don’t do it can steer you away from it. That can go both ways I guess. It’s such a personal decision and people that have had DIEP will tell you it’s the way to go and the same can happen with people that have had implants. Having Rads might help make the decision for you though, it did for me. Keep us updated on how your surgery goes, good luck!!
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I spoke with the New Orleans center and was quite impressed! If you do not have enough tissue from your stomach area they will add some from another area.......Love everything I heard.
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mitzi458, I feel your frustration, I thought everything was good for me to go to NOLA but they only take TRICARE Select and not TRICARE Prime. So now I am looking for someone locally (PS) who would consider performing the DIEP if not then the plan is to go without the reconstruction until later . I keep trying to see the pros in implants but can’t feel satisfied about them. I believe that I would rather go without vs having implats
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Hey, everyone. I thought I would provide an update now that I am a week out from my stacked DIEP, which was performed 2 weeks after my unilateral MX and removal of 7 lymph nodes. Since we we weren't sure at the time of Mx if I woukd need radiation (good news was that pathology came back clean), we delayed reconstruction, which was great for me bc I wasn't ready to make a recon decision yet. But they did put a tissue expander in at the time of MX as I wasn' sure what I wanted to do recon-wise yet, plus I lost about 1/3 of my breast skin, so filling the TE over the few weeks between Mx and DIEP helped to stretch my skin some before the DIEP, so I would have less of a patch on my breast.
Maybe this is for another post, but I can't say enough good things about Dr. Boutros in Houston. On this forum, everyone talks about NOLA to no end, and I did have a consult with them. But Dr. B does all the things NOLA told me in the consult set them apart, and then some. If anyone wants to PM me, I can give specifics. I live in Houston with 3 small children. NOLA was going to be diificult for me and my family. Dr. B was perfect for me and honestly gave me so much one on one attention (cell phone, texts, calls at 10 pm and 6:30 am), no other doc would hold my hand like that. He's technically tops, an artist, and a perfectionist, and a strong Christian if that matters to anyone. It did for me. He prayed with me and my husband before going into the OR. He only does that for patients he knows would want that and is not pushy at all about it. He gives his time freely and with no charge every year on medical missions. He has gone on about 20 trips.
A week out, I am mobile around the house and can do most things for myself. I do need help with washing my hair and scrubbing my back, but I can do the rest of my showering by myself. Climbing the 20 steps to my 2nd floor is not a problem, and I do it several times a day. I'm off all pain meds other than Ibuprofen and occasional Valium. I will say I sleep a lot, like 8 to 9 hours at night and then one 2 hour nap midday.
As for undies, my faves are ones that sit below my abdominal incision line. I have some old stretched out pairs, as well as some thongs that do the trick well. If I don't have to leave the house, I just wear the B-robe everyday that is made just for patients like us. It's perfect and can either be bought directly from them or on Amazon.
Leatherette, you mentioned you were told you're too small for the DIEP. I was also told this by the PS at MD Anderson. But I got 2nd, 3rd, 4th, and 5th opinions. And all the rest said I could do the DIEP, but it would have to be a stacked DIEP. So if this is still something you're interested, ask about the stacked, even though you have a TE now, which is what I had. Stacked DIEP is only an option for unilateral Mx.
Thank you for all the support on this forum. You ladies are awesome.
XOXO, MommaGin
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MommaGin. So happy to hear that your recovery is going well! Did I see it right that your DIEP was 2 weeks after MX? Just 2 weeks? I had positive nodes in surgery and TEs put in but was told I need to wait 6 weeks minimum for DIEP once radiation need is decided. I believe I will be discussing radiation with my BS at my post op Monday. I have a lot of swelling on the lymph node removal side and a lot of discomfort like stretching across my chest. Since you had TE then DIEP so recently do you have any different feeling during recovery in your chest area?
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TWills, I am so excited for you! I know you just want to get this over with. You will be in my prayers, I am also having my preop appointment next week for my total knee revision on the 5th my BMX is not scheduled until April now. Keep in touch with your journey
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MamaGin, you pm me with the information on Dr Boutros in Houston I live in San Antonio and I looking for a Doctor who 1, accepts my insurance and 2, who is willing to perform the DIEP procedure
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Yay MommaGin! So happy for you, it’s awesome to hear about great out comes from a variety of Dr’s! Sounds like your recovery is going smooth, I hope for the same:) Thank you for the update and all of the great info.
Yes Elijahgirl, I’m ready to get on with it, I’m excited too. Good luck with your knee surgery!
Teaberry11, I hope you’re healing well and are comfortable!
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hello and good wishes to everyone...
I am two plus weeks post-op for Diep mastectomy on left breast.
My question is to those who are through it or experiencing post-op. My right breast is sometimes cool to the touch but my left post-op breast is very very warm, not necessarily hot to the touch, but now I am feeling the heat without touching.. I know there is lot of healing going on in there, but it is too late in the day here to call the dr's office, so inquiring here first.
thank you
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Ok, I have twice pecked out a lengthy reply and pressed "submit" to find it nowhere to be seen. If I get a chance in next few days, will try again.
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Hi lifewins. I think that we have to be our own best advocate in theses situations. Please call your surgeon's office and share your concerns. They will ask about your temperature and drain output and make an assessment to rule out infection. You might be prescribed antibiotics. If it's not a problem, you can gain some piece of mind. The one thing about the Diep surgery that we all deal with is high anxiety and worry. Your concerns are valid.Keep us posted.
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I'm trying to post again. I hope that the 3rd time's a charm....
Teaberry, you asked did I really do the DIEP 2 weeks after Mx. Yep! On Jan. 29, 2018, I had a UMx, removal of 7 lymph nodes, and insertion of a TE beneath my muscle. Because we didn't know yet if I would need radiation (and frankly because I couldn't yet decide on my recon method), I delayed reconstruction. The pathology came back clean, so I started exploring recon alternatives. I talked with the PS at MD Anderson. I met with 3 private PSs in Houston that had been referred to me by many others. I called NOLA and had a phone consult, sent pictures, and asked a lot of questions. In the end, I decided to go with Dr. Boutros in Houston for an immediate DIEP on Valentine's Day, and I am so glad I did. I made the choice for the immediate recon surgery for a variety of reasons, which will probably not pertain to everyone, but here they are:
First, Dr. B wanted to get the TE out of my body before infection had a chance to set in. That does not happen to everyone of course, but this forum is full of stories of women who have suffered from TE infections, so I took the risk seriously. Allegedly, the risk of infection peaks at 3 weeks post-insertion, so we were under a time crunch to get it out.
Second, he gave me the alternative choice of keeping the TE in for a few more months while we continued to fill it and expand may breast skin since I had lost 1/3 of my breast skin in the Mx and would end up with a patch of abdominal skin on my breast if I didn't stretch out my breast skin more. We discussed the pros and cons. The pro is a potentially better cosmetic result. The cons were numerous: the risk of TE infection; the fact that when you inflate a TE, you hope it will completely inflate outwards, but there's a chance there could be some slight inward inflation, and that inward inflation can mess with your anatomy (e.g., move your ribs, which I did not realize are pliable, not brittle); 4 months of weekly TE fills -- while this would not be painful per se, I had already experienced 250 cc of fill and knew enough to know that they are uncomfortable and just make you feel blah for a day -- this is something I could tolerate, but wondered if it was worth it all. I discussed all of this with my BS who performed the Mx and with the PS who had inserted the TE during my mastectomy -- both at a world class cancer institution (MD Anderson). They agreed that these risks were all real and should be considered. My BS also told me that he had no qualms whatsoever about me going straight into the DIEP 2 weeks post-mastectomy and lymph node removal, even though my left arm was still sore, did not have full range of motion, and still had pain and inflammation.
Third, I am a busy woman. I have 3 little kids. I have a 27 year old stepdaughter who has been in my life since she was 4 (and we are very close) and who is getting married in May, and I am attending and/or hosting a few bridal showers in March and April for her. Before my breast cancer Dx, we prepaid for a spring break vacation for mid-May and talked out neighbors into joining us. I am also an attorney for a large law firm. The Firm has been wonderful to me, but I feel guilty about saddling my colleagues with all the extra work while I'm out, especially since another one in my section just had a baby and is on maternity leave, and a third one just announced he's leaving for an opportunity he couldn't refuse. My Firm has been so good to me over the past 15 years that I have a great sense of loyalty and gratitude to them.
Fourth, I visited with a former patient of my PS who was willing to show me her patch. Hardly noticeable. Plus, most of mine will be obscured by my nipple and areola reconstruction. What will be left will be lower quadrant. Even in a bathing suit or a low cut dress, no one will ever see it except for me and my dear husband, who said to me, "honey, I don't care if you have no breasts and will love you the same." That's what happens after almost 21 years of marriage. It's not like I'm going to be posing for Playboy or anything. My PS assured me I would love my breasts. Honestly, I feel that some women have a hard time accepting their cancer and need perfection in their bodies or else they feel they have a "constant reminder" of their cancer. My father had his bladder removed due to cancer 5 years ago. He has an external bladder now. Talk about a constant reminder and game changer. But he has the most beautiful, positive attitude and counsels patients at MD Anderson all the time. He is my inspiration. We don't need perfection, ladies. Although, I do feel I will get nearly that with the choice I have before me.
In the end, I decided that I needed to move forward and get this behind me. I want to be done with all reconstruction in 2018. I don't want to have drains hanging from me at my daughter's wedding. My stepdaughter also just bought her first house. I'd love to help her fix it up. My husband just got laid off due to an elimination of his position, and our wonderful insurance will probably run out by July (I can go on COBRA then, but would prefer not to). We will have other insurance options, but will probably need to start all over with meeting deductibles and out-of-pocket maximums for the year. Bottom line: We have a life to live, and I don't want my recon dragging on and on and on and on.
So this is why I chose to have the DIEP just 2 weeks after my Mx and lymph node removal. Sure, the first 2 nights may have been tougher than for most DIEP patients because I had still been sore and not fully recovered from the first surgery. But I'm great now 1 week post-DIEP, and I am looking forward to phases 2 and 3 in 2018. I want to be FINISHED in 2018 and move on with life.
My advice is to find the best PS you can afford and that is easy for you to get to. I found one, and he has made all the difference in the world. Anyone near Houston looking for someone, I cannot recommend Dr. Sean Boutros enough. I'm convinced that technically, he's on par with the docs in NOLA. He's done over 1,000 DIEP procedures, including for several of my friends. He also is the most compassionate, loving, caring doctor I've ever had in my entire 47 years. Every time I see him, I just want to give him a hug. I can ask of him any question I want, day or night, and believe me, I did. I texted him multiple times, even at midnight, and he either answered immediately, or at 6:30 AM or after surgery. He sent me pictures, he talked to me so many times outside of his office, on his commute home, while he was having breakfast with his toddler, after he put his kids to bed, and for 45 minutes or more each time. I am trained as an attorney to do my due diligence, and I sure was not going into recon without that. I drilled him to death. He was patient through it all and gave me all the info I needed. No other doctor held my hand like that. I cannot say enough good things about him. Anyone wanting more info, please PM me. I am happy to talk to any of you on this journey. There is a lot of info on this forum about the NOLA docs. They are wonderful, but they are not your only solutions for an outstanding experience, so look around locally, and you may find someone great.
Good luck to everyone scheduled for the DIEP this year. I wish you all the very best in outcomes and recovery. I know we all have different considerations and different needs, and it's not one-size-fits-all. We have to make the decisions that are right for us. We are all sisters in this journey and a wonderful source of support for each other. I know that I could not have made it this far without all the support from this forum and from others who have walked this road before me. You are all beautiful and strong.
XOXO, MommaGin
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Oh, and to Lifewins: I would ask your PS team (if not the doctor, then his nurse or PA) about the warmth you are feeling. I had only a unilateral Mx and DIEP on one side only. 1 week out, both my breasts feel the same warmth-wise. However, I understand that it is normal to experience inflammation, some redness (and maybe even some warmth) around surgical sites. I'm not a medical professional, so I would recommend you call your doctor's office. Don't feel bad about asking questions. I ask a million. Today, I just texted them a picture of my drain site because I was worried it was becoming infected and received 3 responses all assuring it was normal. It is part of their job to answer questions like these, so don't feel inhibited. And if it is after-hours, call their triage line. They have nurses and doctors on call 24/7 to answer questions like this.
Hoping for the best for you.
MommaGin
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I’m so upset. I met with my PS to set the date for my DIEP and she informed me that she had taken a position at another hospital. I now have to start all over with another PS in her group and she tells me that they’re very strict about having a BMI of 30 or below so I now need to drop 25 pounds before I meet with the new PS.
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Hi everyone! Today I had my second PS follow-up post-op delayed bilateral diep flap on 1/22. He said I didn't have to wear the abdominal binder anymore or wear a bra anymore! Woot woot!
And everything looks great! Scheduled phase 2 for June 28th. I start work 3 days a week x 2 weeks on 3/6, back full-time 3/20 (8 weeks). After all I went through with multiple surgeries and infections, I am not rushing anything because this is my last hope! I am so grateful.
Praying for all of you who are pondering what to do, going through treatments,waiting for surgery or recovering. God bless you all!
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Hi everyone! I had my BMX DIEP on Thursday, 2/22. The surgery went very well. It only took 4 1/2 hours. My breast surgeon and two PS plus 3 PA's all working together got the job done.
I will probably be released Saturday. Everything is going better than I expected. It is strange to wake up to two breasts. The pain level is about what I expected but it is being managed very well.
I didn't get any sleep the first night in ICU. Hourly checks on the blood flow in the chest prevented any real rest. I am having issues with my BP and hemoglobin dropping. Also my oxygen sat. stats keep dropping. Hoping those issues clear up by Saturday.
Wishing everyone quick healing.
Blessings,
Barbar
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Hey Bella2013! Great to hear from you! So glad that you’re doing well and hopefully your BP and oxygen will get under control and hopefully rest will come easier for you. Happy healing to you!
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Sorry KimE, that really stinks. What a let down after all that work. Is there anywhere else near you that you’d be comfortable with?
Welcome Georgiaredskin, we’re in the same boat with multiple surgeries and infections so yes, I definetly understand. And how wonderful that everything looks great, that’s awesome:) Thanks for joining us!
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bella2013, you go! Great news. You may get a blood transfusion. I needed two. It was a bit scary but it worked. I had the same issue with oxygen. It took a while to be weened off. The spirometer will become your friend. Move as much as possible. You will be glad you did. Speedy recovery
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Congratulations bella2013!!!
TWillis, I have Kaiser insurance so I have to use their PS. They handed me off to another surgeon and hopefully he will agree that DIEP is the way to go or I’ll have to find another surgeon. I should have had the surgery last November but I didn’t want to leave my job hanging anain as I had just returned from being off for four months with my BMX and chemo, plus I wanted my body to heal. May was my target since I work at a university and summer is slow.
This has been a hard month for me, I lost my mother on the 9th.
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Oh KimE, I’m so sorry. This is a lot to deal with all at once, do you have a good support system?
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I am home now. Can't believe I have this surgery behind me. I look forward to focusing on healing. First night home I really pray I get to sleep. I haven't had any deep sleep since my surgery on Thursday
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So good to hear from you Bella! Surprised you are home already— they sure don’t waste time! Wishing you a smooth recovery and lots of Home support! ❤️
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Teaberry11, I am surprised I am home too. I would have been okay staying another day or so. I can tell my DH is greatly relieved to have me home. He is taking very good care of me. I feel more motivated to get up and move around than being in the hospital.
The last fourteen weeks has been such a roller coaster ride of highs and lows, of decisions I never imagined I would have to make. I am grateful for the DIEP Flap procedure. It was the right decision for me and I do not regret it. Although I do feel like I fell off of a 10 story building and landed on my chest and abdomen😊. Each day is getting a little better
I did sleep really well last night.
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So glad you’re doing well Bella2013!
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Hi MommaGin,
Glad you are home and doing well! Actually, my PS said I am a good candidate for DIEP, but I may not have enough tissue to match my D-DD other breast, so may wind up smaller. I will ask about stacked DIEP, but my interpretation of his plan is that he will use as much of my tissue as is feasible (I’m a uni). He’s one of the pioneers of DIEP, so I’m sure that he knows about it, but I have not heard him specifically use the term “stacked.”
So good to hear everyone’s recovery reports! Bella, Georgia......
And sorry about your setback, Kim, hope there’s a favorable resolution soon.
Can we talk recliners? What do people have, what features are the most useful, rent vs buy, lift/no lift, less necessary for uni than for bi? I’m looking into it to have one ready for June! I was on total bedrest for three months when pregnant, so think I can do whatever it takes (within my power) to keep incisions closed (my major source of anxiety re: this procedure)!
Thanks!
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delayed update, I did write to the Dr's office, my operative term was very warm so they responded that it is likely ok and to monitor. That day it was approaching towards hot, but the day later and today it is just mildly warm. I have a Dr's appointment this Tues so will ask more questions then.
I think I am going to ask if it is ok to use aloe vera and vitamin e on the stomach scars yet...Or just the general stomach skin. I am still very very tight and can stand up straight sometimes, but it is rare still. I do not want to push the scar area or the skin too much, but will ask for ideas to proceed. I would love to hear what others have done to help their tummy skin heal. I will also ask about some of these belly bulges, esp under my right rib which protrude and sometimes hurt. It may just be intestinal stuff.
Bella2013, I am so glad for your good outcome, get lots of rest and continue to drink lots of water, even though you will have to get up more often to go to the loo, I think it does help. And those lung exercises, keep those going. I can't imagine how difficult it is to move around with two Diep mastectomies.. I did time the nerve, pain and muscle relaxer meds for the time I was going to sleep as it helped a lot to sink deeply into sleep. And lots of naps too.
hello leatherette, I did purchase a POWER recliner on sale at Macy's. I had briefly looked at rental but the few sites I looked at made me think it was a racket, but maybe you will have better luck. I capitalized 'power' as a manual will be too much of a strain. We opted for a recliner with a smaller footprint over optimal comfort and I supplemented with cushions in all the right places. I slept in this recliner and lived in it every day. I only have been sleeping in bed a couple of times through the night so far just this past week. It was SO worth the money, they can definitely range in price from $250 for some amazon power recliners I saw to over 1k and up.. There are choices in the middle ground. My Diep mastectomy was on my left breast so it let my right arm access the power button. Most of the power buttons are either on the right side OR some have a device connected with a cord which can be used with either hand... I think the lazyboy variety of power recliners had the device from what I can recall. There is some diversity in how many areas can be adjusted as well. Mine is very simple, just two buttons, one extends the whole chair out and the other brings it back in. Mine was also not too loud and it didn't move too fast. Some I tried are a little too fast. Some allow separate controls for neck area, lumbar, legs etc.. Some rock like a rocking chair or swivel or are stationary. I opted for stationary to limit stumbling.
I had a table to my right for all the things I could reach for while sitting and a blanket I could reach for in a big basket on my left. I used an additional pillow towards the back for comfort and to shorten the distance when I sat and got up from the chair as I wanted to limit wriggling in and out of the chair. I did not get a power lift, but tested one at a store, it felt like it could be a potential hazard for me personally, but it likely helps others out there. Suffice to say I am so very happy I read about some folks using power recliners on this site. I know a lot of people have gotten by fine without them, but for me it was very beneficial.
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Lifewins, how long did you keep your drains
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Thank you TWills and Leatherette!
Leatherette I used a manual recliner we had in our rec room. I only stayed in it a week because due to the pain in my stomach it was even harder to get out of than the bed and I certainly couldn’t do it myself. So I had my husband buy 4 king size $5 pillows from Target (best decision!)to help prop me up in bed and for under my legs. It worked a lot better after the diep.
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hello, I had my surgery Monday 2/19 and was discharged Friday. They were ready to let me out Thursday but I was not comfortable leaving since I still was having problems walking, getting out of bed, etc... I had a few hardships which have made this much more difficult than expected. I developed an allergic reaction to the antibiotic they gave me in the hospital (and sent me home with). no one identified as an allergy until today..... So I am covered with an itchy rash. Part of my abdominal incision developed blisters which now opened. The doctor said it was from the skin being pulled too tight or stressed when laying down.
Anyway! sorry not to be a ray of sunshine after surgery but I am in more pain than expected. I agree with everyone else about investing in pillows, or a recliner. We have an adjustable bed and my husband still has to help me in and out of bed. But I know by next week I will be able to do it by myself.
I have a follow up appointment on Thursday and am looking forward to seeing what the team has to say.
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Casun19, sorry you’re in such discomfort, that sounds awful! As if the surgery wasn’t enough but to have a reaction to the meds really stinks. I hope you’ll get some relief soon:)
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hello Bella2013,
My Diep Flap mastectomy on left breast was Feb 5th
- Feb 15th - right hip drain taken out
- Feb 19th - left hip and left breast drain taken out --- the fluid flow slowed dramatically the on Feb 16th
My husband took good records. I asked and was told the reason they want to get the amount of fluid under 30ml is that your body can handle the absorption of fluids under 30ml, but over that it could cause issues or strain.
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Hi ~ this is my first time on this thread! Am wondering if I'm making the right choice to go to PRMA vs. NOLA. It looks like PMRA says I'm a candidate for the DIEP, and will be getting scheduled... hopefully asap and will know shortly. Had finished with chemo November 1, and should have gotten radiation, but the docs said not necessary with a mastectomy... so am anxious to get this under way. Chose Dr. Ochoa from viewing testimonials, etc. From what I've read it looks like NOLA has a lovely center dedicated to breast reconstruction/surgery, even down to healthy food, etc. wow! Other than that, I am under the impression either place will do a great job?
Was diagnosed last June, had chemo, lumpectomy, and now have a left mastectomy and reconstruction with implant scheduled for March 6 near home here, BUT found the information on the DIEP via PRMA through Google searches only very recently, and am going this route instead... It's almost like starting over with doctors and doing a 180, but they have made it so easy & seamless so far. I kept being told I was not a candidate due to being so thin... by people who don't do DIEP (makes me a little angry). So will be cancelling my mastectomy/implant here in AZ, and traveling to PRMA in San Antonia, TX instead for the mastectomy/DIEP! Am curious about how the hospital, the PRMA offices and my lodgings will work, and how often they see me for the 2 weeks I'll be there. I'll be getting a couple of friends and my son to be with me (widow here, so no hubby) for 4-5 days at a time instead of one person for the whole 2 weeks. Have my head exploding with questions on all the logistics, but am sure I should be concentrating on getting through this and to the other side of surgery where things will be healing. This is hopefully my last stop as far as treatment - it was either radiation or mastectomy, and have chosen mastectomy due to the many calcifications in my left breast. All of your questions, answers, experiences and concerns have been extremely helpful, thank you so much! Any further words of wisdom for 'where I'm at' right now are greatly appreciated!!!
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Ouch, Casun! I’m allergic to a few antibiotics, and the reaction was bad enough without recovery from major surgery. I hope your reaction clears up soon.
Thanks for your thoughts on recliners and pillows, Lifewins and Georgiared.
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BLynnB: The hospital staff, nurses and surgeons are all fantastic at PRMA! You will be in great hands! Have you reached out to their patient liaison to discuss travel and accommodations? She can help coordinate all of that for you! During your 2-week stay after surgery you will go into the office for a follow up 2 times. Remember you will be in the hospital for about 3 days after surgery during your two week stay too. They will follow up with you daily in the hospital.
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Hi I'm Elizabeth from San Antonio and I had bilateral mastectomies with implant reconstruction at PRMA 6 years ago with Dr. Nastala. I'm responding because I had all of the same questions/concerns you have and I hope I can help. I wanted DIEP reconstruction but Dr. Nastala didn't think I was a good candidate since I was also too thin. I'm very happy with my reconstruction 6 years later. I have confidence in PRMA....I had searched for the right Dr. and when I found Dr. Nastala I knew it was the right fit. You are doing the right thing having family and friends come be with you, although we Pink ladies are here to welcome you and support you if you need us! There are many hotels near PRMA that are very nice and comfortable. Everything is convenient including shops and restaurants too. If you can rent a recliner that will be a great plus! I don't remember how often I saw Dr. Nastala in the first two weeks (thanks to the drugs lol!)but I do know that you can speak with the nurses anytime and you can also come in anytime you feel the need. The support after your surgery is great. You just need to reach out. When I had my surgery, PRMA had their own wing at the hospital and the nurses were experienced with the surgeries that PRMA does. Remember people come from all over the world to have surgery at PRMA. You're in good hands. Best wishes!
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Hi All, I'm scheduled to have next week a mastectomy of my left breast. I wasn't recommended the immediate reconstruction due to the high risk of needing radiation to my chest wall. I'm still not 100% sure if opting for having the silicone implant after the radiation is the right decision, since my plastic surgeon is completely in favor of the immediate reconstruction but not the radiation oncologist or my surgeon oncologist. Wondering if any of you who went through immediate reconstruction with silicone implant and radiation after had any problems on the quality of your radiation treatment and, of course, if that impacted the overall success of your cancer treatment. Also interested in hearing from who opted for having radiation first then the silicone after how did it go? Thanks in advance!
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Hi, just wanted to encourage you that based on my own experience, PRMA does a great job and you would be in good hands if you go that route! I had dmx+diep this past year and came to PRMA from out of state also (twice--once for phase one and again for phase 2, 6 months later). Logistics were smooth and everyone was helpful and pleasant to deal with. Am healing nicely and getting on with life now, thankfully. Best wishes!
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Hello Lynn,
I do hope you will reach out to me. I had my DIEP flap breast reconstruction at PRMA with Dr. Minas Chrysopoulo, and I, too, am from AZ!! What a coincidence. I also did a combination of having folks help me the two weeks I was there. I can tell you the skill of the microsurgeons there and the facility at the hospital they use is all top notch. I was 58 at the time of my breast reconstruction. I had delayed reconstruction. My double mastectomy was in AZ in May of 2014 and I had my reconstruction at PRMA in December of 2014. In addition to that, this was my 2nd diagnosis. The first diagnosis, I had radiation in 2002 and the surgeon I had at PRMA did a magnificent job of removing the scar tissue from 2002 and building beautiful new breasts for me. I can tell you all about planning for travel, your stay there, what to expect, who to reach out to, etc. Please feel free to email me to ask more questions. Who knows, maybe we're neighbors! My personal email is tgcoutee@gmail.com. I would love to help you out and answer any questions since you, too, are thinking of PRMA via AZ. All the best.
Terri Coutee
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We have each had a little different order to our recoveries and are fortunate there are amazing choices for us. I live in Oklahoma and went to PRMA in San Antonio. After a year without anything waiting for my body to recover from bilateral, radiation and implant rejection/infection. Dr. Arishita and his nurse Heather changed my life and exceeded any and all my expectations. So personal it is hard to believe how many surgeries they do a year.
Recover was much easier than I had expected make sure to follow all the recommendations like protein drinks. I couldn’t believe I was able to walk the day after. They definitely have a system that works well.
I am currently 1.5 years out and my scars are almost gone. Jade roller and foam roller to break up scar tissue under skin and vitamin E oil.
Lots of PRMA advocates (patients) for support online in blogs and FB closed groups.
Best of luck (I didn’t consider that weight gain in future would go to my chest first and leave my chest last belly fat is the best)
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Thank you for sharing your experience, Klangston3! We're so happy to hear you're doing well, we wish you the best!
The Mods
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hi there! I went to PRMA for my DIEP procedure after a failed reconstruction in Kansas. I would be happy to help answer some questions about my experience. Where we stayed, etc.
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Thank you so much everyone for your replies!!! This is wonderful information and you all are an amazing resource, you're awesome! I'll be getting back on here with more questions & would love to be in touch with those who have offered. Have been overwhelmed & stressed out over this the last couple of days (and worried about getting a date set up soon). Am so fortunate, and glad I found you all!!!!
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Hi lovely ladies.
I’ve been reading the posts and have gotten thru page 3. I thought I would take a moment to introduce myself. I had a bmx with expanders in December 2016 and the exchange in July 2017. In August 2017 I developed lymphedema in my cancer side arm. I am seeing a PS at USC who specializes in microsurgery. He is going to do a lymphnode transplant to hopefully fix the lymphedema. He is also going to remove my implants and perform a Deip. I have to be honest and say I HATE these implants! I didn’t know about Deip before my bmx. I have been trying to hold off until June to do the procedure but it is causing me stress to wait so long. Ive been loosing weight because of my lifestyle changes since being diagnosed and I’m really worried tha if I wait too long I won’t have enough fat. I know sounds like a silly problem,lol.
Well, back to reading about everyone. I will keep you all posted as to when surgery will be.
God Bless
Lisa
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Hi Gals...hoping someone can help re: Dr Marga Massey's office. I have tried for 2 weeks to get in touch with someone: called their 866 number and every time it goes to AImee's vm. She has not called me back. I have reached out via their "contact" icon on their website and CRICKETS! I have even emailed Dr Massey on FB messenger! NOTHING! any tips on how to get in touch with ANYone? I need to explant my silicone implants and get a consult for an SGAP. Many thanks Ladies!!
Lisa
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BLynnB, it sounds like you would be in excellent hands with either choice. I live in Houston and went with a doctor my research revealed to me was on par with NOLA. However, I did do a 45 to 60 minute phone consult with the head RN at NOLA who has been there 15+ years. Plus, i sent puctures and was given the oppurtunity to email specific questions for Dr. Dellacose to answer. From what i understand. Your phase 1 stay at NOLA is only 8 days, so that may be a tad easier for you logistically. I have 3 young children ages 4 to 11 that i could not pull out of school for a week, and they were already so distraught at me bering gone for 2 days for my Mx that i couldnt bear the thought of leaving them for extended days at NOLA.
If Houston is easier for you, PM me, and I can talk to you sbout the ace surgeon we have here, who has his own private surgical facility.
Best to you.
MommaGin
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BLynnB, it sounds like you would be in excellent hands with either choice. I live in Houston and went with a doctor my research revealed to me was on par with NOLA. However, I did do a 45 to 60 minute phone consult with the head RN at NOLA who has been there 15+ years. Plus, i sent puctures and was given the oppurtunity to email specific questions for Dr. Dellacose to answer. From what i understand. Your phase 1 stay at NOLA is only 8 days, so that may be a tad easier for you logistically. I have 3 young children ages 4 to 11 that i could not pull out of school for a week, and they were already so distraught at me bering gone for 2 days for my Mx that i couldnt bear the thought of leaving them for extended days at NOLA.
If Houston is easier for you, PM me, and I can talk to you sbout the ace surgeon we have here, who has his own private surgical facility.
Btw, I too was told by two PSs that I did not have enough tissue in my abs for the DIEP, unless I wanted to go down considerably in size compared to my other breast (I'm a uni and my right breast is a C/D). However, the really experienced DIEP surgeons just said I could do a "stacked DIEP," which is basically where they stack two sides of your ab tissue on top of each other to build one full size breast. I'm only 2 weeks out from my procedure, but I'm very happy with the results. Ask about a stacked DIEP option if a PS is telling you you're too skinny, but this only works if you're a uni.
Best to you.
MommaGin
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Hi. I'm new to the forum as I had the DIEP Flap surgery 3 weeks ago. I have the feeling of a bunch of tight rubber bands wrapped around my chest. When does this feeling go away? While we're at it, when did you feel,normal again
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MarinaCat, welcome to our community. We have heard from many that the tightness can take weeks to go away. We found a much older topic that addressed exactly this: https://community.breastcancer.org/forum/44/topics...
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Hello lovely ladies!
First of all, I want to say that I spent 6-8 hours yesterday writing a diary of my experience from opening my eyes in my room after my 12 hour DIEP surgery, to being home, with all of the positives and the challenges in as much detail as possible. Once I finally finished it, I hit “Preview”, and it COMPLETELY DISAPPEARED. :’( I did save a copy, but that was only after the first four hours of writing.
I’ll go back and try to fix it and re-post it, if anyone is actually interested in reading it. I just thought maybe it would help take the mystery out of it for some women and hope it would help.
In the meantime, I just wanted to post about two things that have helped me IMMENSELY in somewhayt frustrating recovery process....
#1- Get yourself a reaching/grabbing tool. My gadget geek husband had three of them so that we can easily grab things like paper towels from upper shelves. The best is one called “Vive” ...it’s the lightest of the three and can pick up very little things, or bigger, heavier things. Spices from the spice shelf, cereal boxes from upper shelves, etc. And if you are a klutz like me, and drop everything on the ground, you don’t have to leave it and ask someone to pick it up for you. I’ve used it to pick up my cell phone, slippers, etc. Pus it’s helped save my sanity and that of my husband who has to do so much for me right now. : (
The other very helpful thing is having several Amazon Echos around the house. So if I need to ask husband for help, I just intercom with him. They are around $50 each (only $29 at Xmas!!!), but if you buy 2, they will take $10 off.
Anyway, hope all of you beautiful 2018ladies have successful surgeries and quick recoveries.
Mitzi 🌺
Reacher Grabber by Vive - Rotating Grip - 32" Extra Long Handy Mobility Aid - Reaching Assist Tool for Trash Pick Up, Litter Picker, Garden Nabber, Disabled, Arm Extension https://www.amazon.com/dp/B00O47NWE6/ref=cm_sw_r_cp_api_ppXLAbV3WGP8P
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Hi Lilo!
I’m so sorry to hear about your lymphadema. : (
I just got out of UCLA a couple of days ago. I had a DIEP flap with Dr. Tseng. (There ere three other women up there at the same time having the same surgery!
Who is your PS at UCLA? If you want to know anything about the hospital, etc., feel free to ask here to Private Message me.
Good luck with everything
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Hi Marinacat,
My name is Dawn and I am traveling from Chicago to NOLA for my DIEP procedure in 10 weeks. I am wondering how your post-op healing is coming along, as I have no idea what to expect. I hear wildly different expectations from health care providers.
Thanks
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Twillis — thinking of you as you prepare for your surgery day tomorrow! It’s finally here! I know you’re ready! Wishing you a smooth recovery!
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Hi Everyone,
I am sorry to say my DIEP surgery was canceled for April 17 at CTCA in Zion. I am very disappointed and have again began looking for other opinions. The issue is my HER2+ treatment of Herceptin and Perjeta. My surgeon does not want to complicate the recovery with these drugs. He wants me to stop the Perjeta now, and miss 3 cycles of Perjeta and wants me to miss 1 cycle of Herceptin. I can't do that. I have already missed 2 cycles of Perjeta during my 7 weeks of radiation. We have rescheduled my surgery for July 10th. I am so disappointed because of the cost and the fact I have to still deal with this . I will have to pay the deductibles and copays again for 2019 and my plan was to be completely finished with my treatments other then check ups. Of course it is not a given I won't need further treatments, and it is possible to still complete this surgery with all 3 stages by Dec 31st if all goes as planned.
I called NOLA again, and they again told me they do not take Blue cross PPO as in network and I would need quite a bit of money of my own. I am sure it would cost me more than my copays and deductibles...
I also called John Hopkins in Maryland. They said that HER2+ treatment is not a problem but want to look more closely at my situation before they agree, I will send them information. Dr Gedge David Rosson, MD is the surgeon. If they can do it now, and I feel comfortable with the surgeon, I will go there and not delay my surgery. I plan to at least go for a 2nd opinion and meet them sometime in the next 2-3 weeks.
Anyone know much about John Hopkins or Dr Rosson?
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Thank you Teaberry11! I’m so ready!
I had my pre-op appt Tuesday and met with PT and was a bit shocked to find out they want me to stay in the hunched position for 4 weeks! I knew it would be a while but not quite that long, yikes. They did give me muscle relaxers to help with the back pain it’s sure to cause. Anyway, I’ll check in with everyone in a few days. The only thing I’m a anxious about is nausea when I wake up, I’m usually sick for at least two days and since this surgery is longer than any of the others that I’ve had I’m sure its going to be bad. Hope everyone is healing well!
So sorry Carmstr, how frustrating! I hope you can find somewhere that you’re comfortable with than can get you in sooner.
Mitzi458, I’ll be ordering that grabbing tool!
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may 15
Nola
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Thank you for the votes of confidence, information and tips MommaGin, bc6912, Elizabeth (enelson901), kellielenke, LizaLee, DiepGal, Lisa, Klangston3
~ since posting last, I've chosen Dr. Ochoa at PRMA now, and am comfortable with this, at last! It looks like I'll go there a couple of days prior to the surgery date for the actual consultation (on top of the medical records, files & photos I've sent them so far). Appreciate knowing your experiences, thank you so much, and so glad to hear you are very happy with your results. I have come to realize one of the hardest things is finding the procedure, doctors and venue for your own comfort level... I thought I had done just that - with the mastectomy & immediate implant reconstruction... then I found you guys!! The DIEP procedure makes me much more comfortable long term, but had to start my doctor search all over, and it all takes more time than you think... or longer than you want it to. Now am just anxious about getting the date set up hoping it's not going to be too far down the road. Have been calling them every other day, LOL! Everyone has been wonderful there.
bc6912 - I will start asking the PRMA staff for help with those resources, glad you had a good experience there! Your timeline is very helpful regarding follow ups... seems that most of the time (for us) is spent healing and resting, and eating well! Thank you so much for your take, it's probably a lot more simple than I'm making it!! Wishing you the very best!
MommaGin - The stacked DIEP may be what lets us have the DIEP? Haven't gotten into details yet with the Dr. and hope to shortly. Am feeling the logistics to be a challenge, but have faith this will all work out. And we have three dogs that have been so sweet during times when I have just wanted to cry (and did and do) from the chemo, etc. They're always there for us with warm fuzzies, the sweeties.
Lisa (lilo) - I've been wondering the same thing about losing any last bit of fat if I don't eat, and keep eating well, lol! I got nervous about the implants from a very close friend who ended up having pretty extensive health problems from them (probably on the unusual side of complications), but was still willing to take the risk until I found out about the DIEP as well. The very best to you for your procedures and recovery! Am doing a lot of reading too!!!
kellielenke - would be very curious about where you stayed, their site does say how far each lodging is from the hospital, but not sure about who has a kitchenette, etc. Did you need to rent a car?
Terri (DiepGal) - looking forward to meeting you next week for lunch! How amazing is that?
LizaLee - so glad your experience was good, and hope you continue to get on with life - that's what we want! Did you feel you needed to bring anyone with you for stage 2? Have been wondering what it is like, but am sure it is not nearly as invasive as the initial procedure! All the best to you too, thank you so much!
Elizabeth - maybe we will meet? I have admittedly lived in a non-BC vacuum bubble until it has now effected me directly - am learning fast! Thank you for the overall tips, am sure we'll get our bearings once whe're there, and it does look like PRMA has all those on-line resources available in order for me to arrange everything once I get a date confirmed. Renting a recliner sounds like a key to comfort - never would have thought of it! Once home, would be a very good idea as well. I will remember about the good drugs, lol!
Sounds like a big help tho! I'll have to verse myself on the Pink Ladies (I suspect it's not from the movie Grease)... paying it forward is a beautiful thing!! Bless you!Klangston3 - thank you so much for confirming the DIEP at PRMA was a good route for you and so glad you're doing well too! You have had quite a journey, we keep getting back up and keep going. So glad you found them and had a good outcome! Not necessarily a straight line, I'm feeling that for sure. LOL on the weight gain in newly unexpected areas, yippee? That will be quite a change, lol! Love your scar tips, thank you! Can't wait to get this ball rolling! I'm going to look for the FB closed group, thank you!
Thanks so much everyone, I am feeling more and more comfortable with going forward, that the logistics will be fine and energy can be spent on being calm, healing, and getting back to life. Wishing every single one here only the very best... what a great place to be able to come for those going through such difficult things to figure out, we're not alone. Thank you & bless you!!! (((hugs)))
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TWills - sending you good vibes and hugs, all the best!!!
Barbara
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TWills! Good luck today on your surgery! Sending out big time healing thoughts and prayers that everything goes well, and that you recover quickly with zero complications. I just sent you a PM. 😁
Happy healing!!
❤️🙏🏻❤️🙏🏻❤️
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Thanks everyone!
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warm thoughts and prayers for a smooth surgery today, TWills! 🙂
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Thinking about you today TWills🙏
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TWills - Good luck with your surgery, I hope that everything goes well!!!
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Hi all, surgery went well this morning and my nausea was short lived amazingly. I’ve never had this easy of a time with it, by the time I was mostly awake it had already subsided. I’m shocked and thankful. My incisions look great already and I know I’m swollen but I think I might be satisfied with the size. I’m not using the pain pump all that much either. All in all I feel good. Thanks for all of the well wishes and I hope everyone is doing well!
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Wowwww!!! I can’t believe you are able to use your phone or laptop or whatever it is so quickly! How long was your surgery? I went in at 8:00 am and not up in my room until 11:30 pm.I was in so much pain the first two days that I had to lay like a statue. You are off to a great start!! Keep it up up TWills!!
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My surgery was 6 hours but there were two micro surgeons and another surgeon all working on me so that helped. The shape of my stomach looks great, hasn’t been this flat in 10 years. They have a vacuum of some kind all the way across my stomach incision to help with healing and circulation. It just looks like tape with a spongy material in it. All and all I feel tons better than I thought I would. The nurse said earlier I’m in better shape than anyone else that has had the surgery.
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TWills- so great to hear you are doing well!!!
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to Klangston3...when you mentioned these rollers...where would I find a roller like the ones you mentioned? I am trying to put together a list of things to help us all heal and where to get it all. Is the jade roller and foam roller made specifically for your skin?
Thank you
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Hi Dawna, I'm 3.5 weeks post surgery and I have to say that week 3 was a game changer for me. I have to say that the first 2 weeks were extremely difficult for me and I couldn't believe that I'd feel normal again, but today, I do! Between the lessening of pain and the removal of drains, I feel 100 times better than I did a week ago. My breasts don't feel quite as "steel cagey" as they did even a few days ago when I posted. I still have minor areas of discomfort but they are totally fine. It's still difficult for me to look in the mirror when I'm just out of the shower, but I have condfidence in my PS for phase 2, so while I used to look at myself and feel pain and sorrow, now I feel hope. I hope that helps. Best of luck with your surgery.
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Sounds like you are off to a great start, Twills! So glad all went well!
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Marinacat, thanks for posting. I am 10 days post op and was just thinking I might not ever feel normal again. The pain is still intense so I can’t come off of the pain meds yet. My drains have slowed quite a bit. I am hoping to get them out on Wednesday. I believe they are a big contributor to my pain and discomfort. I hopefully look forward to turning the corner at the beginning of week 3.
Was it painful having the drains pulled? The thought of anyone pulling or tugging on my breasts is more than I can handle.
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Twills, that is great news, I hope we all do so well!
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i am scheduled in 2 weeks to have diep in buffalo ny with dr marke burke and dr thom loree.. im very nervous. Has anyone had diep by these surgeons or can give me some advice fr preparing befrvir after surgury
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To all of you “post-op" girls, I have a quick question...
Does anyone still have soreness on their chest 10 days post op? I kind of feel like I was playing tennis or softball and I got hit right between my breasts. The nurse that I saw yesterday said my flap looks good.
I also have burning pain in my chest but I know from researching that itis from the nerves that were cut. I guess that just takes time. One other thing is that I'm short waisted and my binder keeps riding up on me and it feels like it's pulling on my abdominal incision. It's so strange that some doctors insist on you wearing one for 6 weeks and others don't make their patients wear them at all (???)
Hopefully getting my 5 gigantic drains removed on Monday! I'll feel like a new woman after that!
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Mitzi458, I am 11 days post op and yes, I do feel intense bruising between my breasts. Sometimes I too feel that my binder causes more problems than it solves...but I will continue to wear it. It sounds like we will find relief when we get the drains out and are in our third week post op. Looking forward to feeling better
Blessings for a smoother recovery.
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I'm only 2 days out and just really felt pain for the first time this morning. The PA came by this morning and said it was where they had to remove part of a rib. I'm taking a half dose of pain meds(Percocet) and a muscle relaxer which is enough to make me comfortable. I'm pretty good with pain though. They have been watching and taking photos of one side to send to the Dr but they feel like it's just bruising. Otherwise all of my numbers are good. I don't have a binder, I guess this wound vac kinda thing is in place of that. It will be on until my first post op. So far so good:)
Hope everyone is doing well!I know I need to update the list up top but it will have to wait until I'm a little more clear headed. Lol
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Hello ladies,
I'm 32 days out from my NSM with a TE placement and can now think clearly about reconstruction. Because the DIEP procedure is not preformed in my town, I have requested a consultation with Dr. Arishita from PRMA in San Antonio. I'm hoping reconstruction can happen mid-May. I have a couple of questions for all those women who traveled for reconstruction and had only one breast removed. First, how did you feel not meeting your surgeon face to face before surgery? How was communication for you throughout the process? Second, when the DIEP is preformed is the reconstruction (or lift) on your native breast done at the same time or did you have to travel back? I mean, when is symmetry attained?
I realize so many women will have endured this surgery before I get to mine and I appreciate all of you for sharing your journey. I will be glued to this forum like a netflixs series.
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bella2013-thank you for answering. I thought I was in big trouble being the only one feeling pain in my chest. Yes, maybe by the 3rd week, things will start feeling more “normal” (whatever normal is for this procedure). I’ve had drains removed before, Bella, and it does not hurt at all. In fact, you will take a big sigh of relief and feel like a new woman!! Freedom!!
I would have been more worried about my pain had I had bruising or redness or warmth, but for me it’s just a sore chest. It also looks a bit angry near my abdominal drains, so I hope that goes away when he takes them out.
What is a binder used for anyway? Is it for our incision? I guess i’ll find out tomorrow.....
TWills! I’m sorry you are feeling pain, but glad the pills are taking care of it. I asked my doc about the wound vac but he said he doesn’t use it. Seems like a good idea because this binder is NOT FUN. I hope you continue to heal quickly!!
Parachutes: congrats on making the decision to go to PRMA. I would definitely have gone that route had I had time. Lots of women have gone there with excellent results so i’m Sure you will be happy.
Onward ladies!!
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Hi all, I should be released from the hospital tomorrow if all goes as planned. They said everything still looks great and hopefully it will stay that way. They are disconnecting me from almost everything this morning which will be great. Still only taking half dose of pain meds and I’m not feeling nauseous so I’m going to try to keep it at that. I actually have zero pain unless I move so it’s been easy to rest and sleep when the nurses are bugging me lol.Not looking forward to the 2+ hour drive home tomorrow, there is lots of construction so that will be fun! So far it’s been worth it! I sure hope I can live with the size and not get implants. I’m willing to be smaller as long as it’s somwhat proportional.
Opt4life, you’re up next! Hoping for great results for you!
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Hey TWills, good to hear your great report. No pain...You go girl!!!
I am anxious, nervous and all that. But I am so looking forward to getting on the other side of this surgery as well. My kindle is book ready and my firestick is movie ready.
My Mom is coming in tonight and best friend scheduled to arrive tomorrow. Have to be at hospital by 6:30 am on Wed with surgery set to begin at 8am and last about 8 1/2 hours.
I have all my after-care meds and something to hold my drains too. I didn’t purchase anything to recline on for my bed but have a wonderfully comfortably office chair that reclines so that may be my ‘bed’ for the first few weeks.
Peace and blessings to all of you healing from or prepping for surgery.
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Dawn, I'm sure I know exactly how you feel. I was on pain meds for 2 weeks and felt that any positive change was just micro-incremental. I couldn't sleep lying down so I was cosntantky just overtired, uncomfortable and teary-eyed. The drains caused redness at the sights and the slightest move was painful. The pulling of the drains did not hurt at all. The only thing that hurt was when the PS had to sort of dig around one hole to get the stitch out. But that was maybe 5-10 seconds.
I never would have believed that I'd feel well again but I do! This Thursday will be 4 weeks and I'm pretty much back to normal. I even feel like I could back to work next week (but I'm not!)
This WILL pass!
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Hello bella2013 , I was afraid about the drains, especially the breast drain and googled for hours on the subject. The stomach drains for me were long and the breast drain is short. The nurse asked me to take a deep breath in and on the out-breath she would take it out. It was not painful at all. The stomach drains are longer and feel a bit like an alien snake is being extracted but blink and it is over. You will feel so much more normal.
I am now 4 weeks out. My bruising is mostly gone, and I am still tending to the stitched areas, which are mostly still scabbed over.
I am more active now, but I still do need rest.
Glad to hear others are moving through, time does heal and all the worries and efforts to get past this will fade. My next step is seeing the oncologist to see whether I will do chemo or not or tamoxifen etc. I did get freaked out about cancer the other night, so I am reading some books and focusing for a time on trying like hell to do what I can to never get cancer again and if it is in me elsewhere now, to try to stop it.
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TWills - it's good to hear that you're doing well and not much pain. I hope that when I eventually get there, my surgery goes as well as yours.
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Me too KimE:) I'm sure I've got some rough days ahead of me but I'm enjoying the comfort of the hospital as much as possible. I was a bit more sore today than yesterday and when the PT got here this morning I asked if they could come back after I'd gotten my pain meds which had lapsed over night. Half a dose of Percocet is still enough for now though
PILLOWS! Get yourself some pillows, different shapes and sizes if possible.
Oh, and I don’t wear a binder but I’m thinking it might be good for the lower back pain from hunching over, as uncomfortable as they sound it actually might be helpful with the back.
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Hello parachutes!
Trust in the process at PRMA with their virtual consultation. They are pros at this and do it often for out of town patients. As far as travel to PRMA, I traveled from AZ to TX and did just fine. With planning it can be accomplished and is quite do-able. The communication after I came home was outstanding. I just emailed the nurse and received a response very quickly. I could even upload photos to her if I had questions. They may attain symmetry at the time of DIEP of they may do it at phase II, which is usually about 3-4 months after phase I. Phase II is quite easy in terms of recovery compared to phase I, but again, with planning, they are both attainable and certainly worth it. PRMA and Dr. Arishita are fantastic, compassionate, and skilled. I hope this helps and I am wishing you all the best.
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Dawnann--we may be New Orleans mates. I am scheduling for May also. I visited there yesterday and they are calling today to schedule. After meeting they have decided that I would be a great candidate for an Sgap versus DIEP
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Bella123-is your drainage below 20 units of fluid in each of your drains? My PS was going to leave one of my abdominal drains in after taking the other 4 out but I begged him to take it out as it was giving out a total of only 15 units of fluid. The rest were between 5-10 total in 24 hours.
It won’t hurt but it does feel weird and good all at the same time! When my home health nurse came to my house, she said the reason my incision felt so hard was because it was a drain. Now that they are out, i don’t feel the pressure anymore but the incision is still hard. I can not communicate directly with my PS, I go through his PA and if she feels my question is important, I guess she forwards it to him (although he never read or responded to the only email that she sent to him).
He did tell me that wearing the binder had something to do with the fluids which is why he agreed to take out all of my drains-as long as I wear the binder for the month. I think it helps your body re-absorb the fluids?
I wonder if I can switch to spanks??
Good luck on your post op visit tomorrow and I hope you get ALL of your drains removed!
TWills-I hope your pain is getting better. Mine only hurt when I moved, too, so I literally laid like a statue for a couple of days unless they made me move!! Lol
I had them give me a muscle relaxer plus my oxycodone at the same time as much as possible. That really helped a lot. Plus they would throw a Tylenol in with it when the timing was right. Where did they take your rib from? Did they tell you they took it? I keep wondering what this pain is in-between my breasts on my chest where it is also completely numb.???
Parachutes-from everything I’ve read, you will be in great hands at PRMA. It seems like the communication is actually BETTER at a place like this because they have to communicate from long distances. Because the second stage is 12-16 weeks after your initial surgery, you will feel good by then and will be ready to go back for Phase 2. If I had had the time, I would have gone there too. You will do great!!!
Happy healing to everyone
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Marinacat,
Thank you for responding. its great to hear from someone else who had the same procedure done. This will be my 6th (!!) surgery for " immediate reconstruction", and I have dreaded each and every one. The drains were always the worst part. Where did you have your diep flap done?
Dawn
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Good Morning, ladies!
I had a delayed bilateral diep (actually ended up being SIEA) on Feb 22, after being flat for 16 months. I am in love with my new breasts! My surgery was 9.5 hours, and I spent 5 days inpatient.
I was geared up for things to be horrible during recovery, and am happy to say that my recovery has been super easy. All 4 drains were removed on day 6, and when I see my surgeon next week on day 20, he suspects he will be giving me permission to get back in the swimming pool, so I can’t wait!
I wanted to pop in and wish you all luck with your recovery/upcoming surgeries. It is worth everything to see your reflection in the mirror and feel like yourself again!
If anyone has specific questions, feel free to ask.
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I am scheduled for May 15th. When is yours? Are you traveling as well?
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I just switched my mind from implants to diep flap and am awaiting the new surgery date. Mid March or early April 2018 for sure
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hi all!
I have a couple questions about the hospital stay and return home. I am thinking I will have less help than I did for the mastectomy so I want to prepare. Thanks!
1. Do you have a catheter in the hospital?
2. Can you get up from a seated position by yourself?
3. Thoughts on shower chair?
4. Thoughts on raised toilet seat.
Giving I will be alone pretty often, is there anything I should plan for now? Thanks
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Hello again ladies,
I do believe I'm totally confused about Phase 1 and phase 2. Since I've already had surgery with a TE placement, isn't that phase 1? I guess I just hoped to be symmetrical at phase 2 meaning hopefully only having to lift my native side.
IronMom3,what do you think contributed to your speedy recovery?
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Parachutes, no, phase one is when they move the flap from the belly, if that’s the flap you’re getting, in place and make a breast mound. The goal is to create a breast mound with good blood flow for stage one. Stage 2 is when they clean everything up and neaten up incisisions, any puckering and symmetry issues. That’s a simplified version, some Drs don’t actually say stages but that’s what it is. Stage 3 would be nipple tattoos or reconstruction if reconstruction can’t bedone during stage two. Hope this helps!
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Kahnartist, hi and welcome:) I just got home from the hospital yesterday after DIEP on Friday.
Yes, you'll have a catheter, mine was removed the day before I was going to be released. I never thought I'd be thankful for a catheter but I was, happy to see it go as well.
I can most of the time get up from a seated position by myself but I would not do it without someone helping.
Absolutely yes for the shower chair and raised toilet seat. I mean, could you survive without it, yes. But just get them. They sent me home with a walker and a bedside potty chair that they said to use as a shower chair. I can't take a full shower until my abdominal therapy unit comes off in a week so it was awesome to sit in that chair to get a through sponge bath and it will fit in my shower when it's time for the real shower.
Protect the abdomen, protect the abdomen, protect the abdomen! Hunched and crunched. While you are sleeping have to be in a crunched position. Anything that will reduce strain on the abdomen is helpful. Pillows, lots of them and different shapes and sizes. I was able to sleep in my bed last night and I used for my upper body a wedge(reading pillow) and “L" shaped pillow and a regular pillow. Under my knees I used a firm wedge with a longer flat area to test my legs. Then I used another “L" shaped pillow across my upper body to support my arms. I know thats a lot but it worked for me, I'm trying to limit my time in the recliner and not go stir crazy. Recliner is good to with pillows for under the knees and arms.
I think my biggest surprised is the back pain/strain when walking with the walker because of the hunched position, that's why muscle relaxers are important. PT said I could use an ice pack, just on the back, to also help with inflammation. I was told sometime between 2-4 weeks I could walk more upright but still need to sleep in the crunched position for another 2 weeks or so. They gave me phases of recovery.
Arms! This is a hard one! I can’t use my arms/hands for two weeks to help me sit, stand or adjust and can only lift less than 5 lbs. For the first two weeks I can only reach up to a 90 degree level to the front and a 45 to the sides. So in the hunched position when standing I can't reach up on my counters really so that requires help. I couldn't stand up long enough yet to accomlpish anything anyway.
I can't imagine being alone for the first week and a half to two weeks after discharge. I mean, maybe I could do things all by myself but I would definetly be breaking protocol and I don't want to have went through all of this and risk a incision opening, a fall, or straining something or worse. You'll need help and a lot of it. I'm terribly independent and it's incredibly frustrating but I'm just going with it. I'll add more later and I hope everyone is doing well!!
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Dawnann--I am still waiting for scheduling but when I was there they knew my timeline and felt May would be great. Yes we will be traveling but not as far as you? We live in Destin Fl. I have been trying to figure out where we will stay between the hospital discharge and the first follow up appointment. We know New Orleans pretty well but usually for play not recovery. Have you decided on any place?
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Hi cindyanne, we’ve lived in Palm Harbor(north Clearwater)for almost three years now but I’m a native of Panama City so I know that area up there well:) We went to Destin all of the time, it’s all changedso much over the years.
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TWills, excellent advice, and congratulations and blessings to you for a smooth recovery. I'm amazed you kept up with posting on this board while in the hospital.
Kahnartist, I will a few other details from my own experience (today's my 3rd week anniversary of DIEP). I had my first sponge bath sitting on a shower stool while in the hospital after my 3rd night. It was the day of my release. I did the same thing at home every other day thereafter, but needed some assistance for about the first week after discharge (with my hair and back and upper arm) because I couldn't extend my DIEP side arm to reach all areas. This may have been related not only to the DIEP, but also to the lymph node removal that occurred 2 weeks prior to the DIEP. Each bath, I tried to do more and more on my own. By 10 to 14 days, I had it under control and started to stand and shower on my own. I used one of those long, rectangular scrubing clothes to reach my back since extension of arm is still somewhat limited. If you have no help, here are some things I'd recommend regarding grooming: get some dry shampoo in case you are just not up to washing your hair w/out assistance in the early days. Use baby wipes to cleanse well after each visit to the bathroom. See if your insurance will cover a home health aide. Even though I have both a husband and a nanny at home to help, I needed the aide on weekends when my DH was running kids to and fro and my nanny was off. My insurance sent someone for up to 2 hours a day of helping me bathe, groom (blow dry my hair), whatever else I needed, plus I had daily nurse visits and still do the latter to this day. It is a great help, and I think most plans cover it, but you have to be assertive and ask....and someone from your PS team will need to write a script for it, so get this lined up while still in the hospital so it's all approved and ready upon your discharge.
Another thing that's helpful: get all your prescriptions filled before surgery and ask them to put them in the smaller bottles, even if it means the big pills have to be split into multiple bottles. To this day, I still have trouble opening the bigger bottles by myself. Those darn child proof caps!
You are going to need something to help you sleep and lounge in an upright position, whether that be an electric recliner, a wedge system, lots of pillows, etc. But I will say even stacking your pillows may be a strain for you in the first few days.
Get some roll-on deodorant. Stick was too hard to apply for me.
Arnica Forte capsules, which you can get on Amazon or maybe at your local pharmacy are alleged to help speed healing. Angelina Jolie's doctor had her on this following her prophylactic BMX and reconstruction. I asked my PS about it, and he agreed it would be good to add. Also good multivitamins and extra Vitamin C.
People gave me books to read, advised me to list the Netflix shows I wanted to catch up on, etc. But with 3 kids, including a toddler, me laying around reading and watching TV was just not in my cards except for about 3 days following discharge and only bc my parents whisked me off to their house to remove me from 24/7 exposure to my kids. My kids visited me daily for a few hours and then left so I could rest. I did catch some of the winter Olympics during this time. My mother wanted me to stay a week with them. However, seeing the impact on my kids of not having me at home changed all our hearts, so I returned home after 3 days.
Set all your dishes, cups, food, etc on lower shelves bc reaching high will be impossible initially. Since you don't anticipate having a lot of help, just use paper plates you can trash vs having to clean.
I like nicely stretched out low underwear, nothing high waisted or hitting at or above my ab incision line. The B-robe, which you get on Amazon is what I wore everyday around the house. It has nice pockets to hold your drains. But I think a regular robe and some sort of lanyard/clothespin system could also work. I avoided pants entirely except when I had to go out in public.
Others may have more to add. Best wishes to you for both the surgery and recovery.
MommaGin
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hello kahnartist, I had diep flap mastectomy in one breast. I think not having full use of both arms will be a lot more challenging. I would say try to get your legs and core muscles in top shape prior to your surgery if there is still time. With just the one breast, I found it impossible to move in/out of bed without assistance, so I lived and slept in a power recliner. I hope your insurance will cover some assistance and if not, call around to see the prices, it may be very much worth it for you to pay out of pocket for some part-time assistance. For the 2nd week, my sister and husband split the days and worked from home and I didn't really need their assistance. There is a lot of sleeping involved. While you are in the hospital with the catheter in, take the opportunity to drink and drink a lot of water to help clear your system of all the drugs. When you are home still drink a lot of water, but you will have to go to the bathroom, so that will be an important part to get right. I didn't need a toilet booster or shower seat, the hospital didn't use them either, but again, I was not BMX.
Now that I think about it, to me the major elements in the first recovery week are sleep, water, food, bathroom. As you get better, have books or netflix on hand to engage your brain outside of yourself..
Good luck to you, I like your user name!
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Got all four drains out today!!! Feel like a new woman! Still tender and sore but nothing like the pain and irritation of those drains by post op day 14
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Horaay Bella2013! Huge step!!
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Twils, how is your transition to home going
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Mitzi458, I’m not positive they took part of a rib but the PA that visited me in the hospital the morning after surgery when I was having that pain said most likely because that where the pain is when they do. I really haven’t had the pain since the morning after surgery. It was slightly to the right of my sternum. Doesn’t seem likely since the pain was so short lived but I’m going to as at my post op next week.
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Please let me know if I need to add you to the list in the header above or correct it. I’m positive I’ve missed some posts in the last week or so. So many new posters! So awesome to be able to give and get support from each other.
I forgot to add to my earlier posts the the worst thing about my surgery was the ride home! I was so terribly car sick! It’s just over a two hour trip and we had to pull over for about 45 mins so I could get it together, the worst!! It’s a pretty rough road between Orlando and Clearwater though. Ugh
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You women are amazing! That's all I have to say. Thank you. I'm gonna feel like a well decorated Girl Scout going into this surgery!
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That’s awesome parachutes, it’s an awesome feeling for sure! I’m so thankful for the all I’v learned here:)
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I will be having my bmx with immediate DIEP on 3/13. Been through lumpectomy, chemo, and radiation-then found out I am positive for the PALB2 gene. Only 5 more days to surgery, getting nervous. Thank you all for the information I have been reading.
What did you use to hold the four drains? A lanyard with safety pins, a robe with pockets worn inside out to place the drains in the pockets.
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Scorpiogirl, I just had my BMX with DIEP reconstruction on 2/22. Just had my drains removed on Wednesday. The hospital gave me one lanyard. I had another lanyard from our local ACE hardware store that was made of a rubbery substance. I used a carabeaner to hook my drains on it. It was good to use in the shower because I did not care about it getting wet. During the day I was most comfortable pinning the drains to my abdominal band or my clothes.
You will need several comfortable sports bras that open in the front. WalMart carries Fruit of the Loom. Buy a couple of sizes larger than your normal size. There will be quite a bit of swelling in your breast area and under your arms not to mention if your PS upsizes your breasts. While you recover your breasts need support like a gentle hug not a tight fitting band.
You will get through this surgery fine. You have already been through so much on your journey to being cancer free. This time you will wake up cancer free with new breasts.
I will be thinking of you and praying your surgery goes well
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Twills--Congratulations on heading home! Hope all is smooth sailing now.
Yes Destin has changed greatly and continues to change. Sometimes it is a challenge to get around. I travel to Tampa-Moffitt- for my BS and MO since we have no real medical here. The Moffitt PS only wanted to do the lat flap which is why I started researching and found New Orleans. The Doctor told me they have something that a patient came up with for holding drains--since it works so well they now use it LOL I wish I would have asked for a description so I could share here. Maybe some others who had their procedure in New Orleans could shed some light?
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cindyanne
My husband and I are booked a few days before the surgery at the hotel monteleone. Its his first trip, and I haven't been since August 2005. I still haven't booked anything for after...hopefully somewhere close where I can rolled into for a few days! Cant imagine getting on a plane 8 days post op, but thats what I gotta do! We live in Chicago. 9 weeks to go. Chewing my nails off..i wish I could fast forward. I'm trying to prepare for my recovery. I'm putting my mattress on the floor to ease getting in and out of bed. Why oh why didn't I think of that after all my other surgeries!
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Cindyanne, the PS’s I saw around here also wanted to do Lat Flap, I went to Orlando to find someone that does a lot of DIEP, he is the best around here for sure. I’m interested in that drain holder, I’ve always used a lanyard when I’ve had drains and it works good.
Dawnann, I would not be able to get up from amattress on the floor. Gravity is rough when you’re weak. My bed is quite high and it’s even easier to get in and out of than my recliner.
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Thank you Twills and MommaGin and all!
I am really thankful for your advice! I am ordering some new supplies and calling around for home care help today! Surgery was just rescheduled to Friday, March 16!
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Congrats Kahnartist, it’s so nice to have a plan.
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TWills
I have the hardest time getting out of bed after surgery. My bed is antique and quite tall. I use a little step to get in everyday. I thought it would be easier to just "roll out" of bed. I guess I wasn't thinking of walking upright! My surgery isn't till May 15th so I have a little time to prepare. Oh, by the way, for all you ladies with drains out there...I showered with them in a nylon fanny pack that I didn't care if it got wet. That worked great.
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That’s a great idea for drains Dawnann, and I just thought I’d warn you about how weak and heavy you’ll feel. I feel like I weight twice as much as I do, it’s a very strange feeling. I don’t have as much pain as I did after BMX and then the Tissue Expander placement but the overall weakness is worse. Standing up from a seated position is quite hard I’ll be a week out tomorrow and I’vebeen able to do it pretty much by myself since I’ve been home except for opening and closing the recliner, not even close to being able to doing that.
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Kahnartist, I too scrapped the original plan for implants in favor of DIEP. I noticed you too are in Chicago. Where are you having your surgery done?
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TWills, I will be getting that Grabber for sure, as my powers of telekinesis aren't kicking in yet.
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Hi dawnann,
I am do it at Evanston. I have been with NorthShore for all of these fun aventures.
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kahnartist,
How healthy and active are you/were you prior to cancer? I believe that makes a big difference in the recovery from surgery scenarios you read on this site.
You will have a catheter placed for surgery. Mine was removed the next morning when I left ICU.
Getting to a seated position was difficult the day after surgery but by that afternoon i could get out of bed by myself, unplugging my monitor and IV and rolling all that to be bathroom.
I did not need a shower chair or raised toilet seat when I went home on day 2. I slept in my regular bed from that night forward.
Good luck
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Kahnartist
Best of luck. I am a Loyola "alumni ".
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Cindyanne, Did you travel to NOLA for a consultation, or did you do a photo consult? Do you have a date yet? Do you know who your surgeon will be?
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Dawnann, yes I traveled to New Orleans for the consult. Actually was there after a cruise anyway so they worked me in. Dr. Trayhan will be my surgeon. Still waiting for a date. (my only gripe with them is how long it takes to return a phone call) We did discuss DIEP but not enough tissue. Dr. Trayhan did say that you would only be hunched over a few days due to how they perform their procedure?
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cindyanne, I think they work on Louisiana time. Its almost as bad as Hawaii time. s-o s-l-o-w. I may be needing a Hybrid procedure if I don't have enough tummy. I have heard about the tightness and hunched over. I wish I could go for a real live consult, but I don't have the luxury of time. Dr. Blum will be my surgeon.I do love how they call you "miss" so southern.
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CindyAnne- Windsor Court and Stay Alfred were both great for after surgery. If you go with Windsor Court let Heidi at the center make the reservation. They get a better rate, room upgrades, discounted parking and a huge breakfast allowance. Also ask for a room that has a handheld shower head.
DawnAnn- many of us are bent at the waist for weeks after DIEP even when we have the surgery at NOLA. It’s not a big deal really, it just means pillows under your knees anytime you lay down, legs up when you sit (usually with pillows under the knees), and dealing with some back tension from the posture.
TWills-so glad you’re home! Sounds like you’re doing well. Every day will get a little easier. Time is your friend.
Bella-Yay! No drains!!!
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lula73, thanks for that info. I will call Heidi to see what she can do about reservations. Still nervous about doing a "destination surgery".
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Hello ladies, its day 3 after DIEP. Getting up and down on my own, using the bathroom and trying to do 3 laps in the am and pm around the hospital ward.
I bought all this stuff with me loose clothes, wedges and potty booster and I haven’t opened a thing as the hospital had everything I needed. My care has been incredible. ICU the first night was as if I even looked like I had problem someone was there in seconds to assist. I was on a vasculsr ICU so I was the least serious of their patients so the nurse said everyone wanted the ‘easy’ case.
Moved to regular room the day after surgery snd should be discharged this evening or tomorrow morning.
Flaps look good and pain is very tolerable with my valium and percocet (though they've eased off of this slowly).
Peeing a lot and passing lots of gas but told that’s actually good. My breasts look exactly the same in terms of color except much perkier. Wow! I haven't seen stomach yet....still very swollen and puffy.
Awaiting pathology on lump removed but the 2 nodes removed were benign. I also had a hernia (unbeknowst to me);that was repaired so got two for the price of one on that.
If all continues to go well, I will be singing the praises of DIEP for sure.
Peace and blessings
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Yay Opt4Life! Continued healing!!
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sounds like you’re doing great, Optforlife! So glad things went well and you’re feeling good!
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Thank you Lula73! I love the Windsor Court but unfortunately it is $500 per night during my time in New Orleans.
Yes I finally have a date yeah! May 1
Dawnann I understand your nervousness about a destination surgery but I did my BMX and all of my treatments in Tampa. I will say just know your body and plan your travel accordingly.
Opt4life -- you make it seem easy LOL All the best!
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Cindyanne-is that the rate through the center
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Cindyanne, sorry didn’t mean to sound like it was so easy. The first night I truly felt like roadkill from being hit by a mack truck....everything ached. Arms, legs, back, tailbone, neck....stuff that wasn’t operated on just ached. But every 24 hours has been better than the last 24 hours for sure.
I’m heading out of the hospital now waiting for my Mom (who is a nurse) to finish questioning my PS. He isabsolutely giving her his ‘I’m the expert here look’ so I better go rescue him.
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TWills-you said you wished you could use a binder for lower back pain. But it’s weird! My back hurts more with it on than when I take it off! I do have this corset that I bought years ago at a show for Hairdressers that helps with back pain. I tried it on and it was like heaven. My back suddenly felt great, my chest felt great (it only went as high as the bottom of my breasts). And my abdomen felt great! But it was really tight and I panicked thinking I might be cutting off the blood supply somewhere that I wasn’t supposed to be, so I took it off. : /
The only thing that helped my back is Tylenol, muscle relaxer and standing up straight
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Hi everyone!
Glad everyone is doing well. My surgery has been postponed because of my HER2+ infusions They won't be completed until June 6, 2018. I am very disappointed about that. I contacted John Hopkins and they agreed that my Her2 treatment is a non issue, but can't fit me in until October. NOLA again stated they don't work with my Blue Cross PPO from Michigan, it would cost plenty out of pocket.
So my new date is July 10, 2018 in Zion at CTCA with Dr. Pelletier and Dr Lui. They believe they can complete all 3 stages by Dec 31st, barring any complications. So Zion it is. I am comfortable and well acquainted with the process and the Dr.s there.
I am reading with interest everyone's experiences and wishing you all the best. Thanks for all the support and suggestions.
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Lula73--No I am still waiting for the Center to call me about travel. It appears I picked a busy week in New Orleans though
Opt4Life--I was just joking...I was sure it easy not an easy experience but was happy to hear your positive take on it. Please keep us posted on your progress. I am learning so much from everyone!
Carmstr835--I understand the HER2 thing but remember better safe than not.
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mitzi458, my back is really the only thing that’s causing me pain and it’s bad. I can’t even stand at the counter and wash both of my hands at the same time, I have to brace myself because my back will cramp up and feel like my muscles are ripping. It’s bad. Maybe I’m hunching a bit more than I should or my back was weaker than I already knew it was but sheesh! I know they said I was in the thinner side, which I never hear in any other situation lol, so my abdomen incision and pulling is quite aggressive so that’s got to be the reason. I’m consistently taking muscle relaxers and ibuprofen 800mg and I’m sure it’s helping but I really can’t tell that it is. Just can’t take the oxy, it makes me feel to bad and it wasn’t helping either. I’d say today is a bit better than yesterday’s though. I just want to stand up straight so bad. Anyway, I’ve got boobs so there’s that lol. I’m a hairstylist too btw. Other than the back everything looks great and is healing well, I can’t see my abdomen yet so we’ll see on Tuesday when the wound therapy bandages come off. Hopefully I’ll get all 4 drains out as well.
carmstr835, sorry you’ve had to delay, I know that’s frustrating. Hoping all of your stages can fall with the year, I’m trying to do the same.
Hope everyone is healing well!
Good luck this week to SadieSue09 and scorpiogirl! Sending good and healing thoughts to you and your Drs!
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Thanks for the well wishes TWills. I've been absent on the boards since I first showed up a few weeks ago, but I have been reading everyone's posts and they have been a huge help to me. Luckily, I've got the first appointment in the am tomorrow, so I'll report for surgery @ 6 am. While I am super nervous, it's not the dreading it kind, just an adrenaline type of energy. I'm so ready to get this part over with so I can get final pathology and a final treatment plan.
I did decide on UMX with immediate DIEP reconstruction and luckily, it's on my non-dominant side. I'm really hopeful that eases some of the frustrations during recovery. But I'm ready with lanyards for breast drains, a fabric tool belt like thing for abdominal drains, enough safety pins to melt down to make a car (I tend to lose stuff like that easily), wedge pillows, neck pillows, leg pillows and a Amazon Fire tablet with Netflix on the ready.
I'll try to post updates during my recovery to let everyone know how it's going.
Sending good vibes to scorpiogirl as well. You've got this!
Gentle hugs to all
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You sound ready SadieSue09, I us my lanyard for both breast and hip drains. I've also just pinned them the the inside of my pj top. Good luck tomorrow and I'll be thinking of you! You'll do great:)
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I'm scheduled for flap reconstruction surgery on March 19th in New York City with Dr. Joshua Levine and Dr. Robert Allen! I can't believe it's a week away! I'm still deciding between PAP and SGAP. I'm leaning towards SGAP. Is there anyone here who's had PAP and/or SGAP? If so, what are your thoughts on one over the other, pros/cons, etc. I could have DIEP but don't carry as much weight in my stomach. Thanks!
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Hi Outdoorsy, welcome!I can’t answer your question but I wanted to welcome you and let you know we’ll be cheering you on!
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Sadie, praying for a truly successful sirgery and speedy recovery.
Twills, sorry to hear about the back pain and agree that Oxy ultimately makes you feel bad (fuzzy and naseous for me) and therefore using it longer is not the best. I haven’t taken one since midnight yesterday so hope that can be my last.
Cindyanne, no worries. Just wanted to make sure I wasn’t coming across flippant like this surgery and recovery wasn’t serious business.
Question for those who have gotten their bills already. My PS is out of my PPO network and therefore I will have to cover a bit of his bill. He forgave the remaining balance from my lumpectomy\reconstruction. But I have no doubt he will NOT do that again for the DIEP especially since this involved his partner.
Any ideas what I might be looking at in terms of out of pocket expenses. I think my portion is 10% and I’ve met my deductible for this year already for in and out of network. I know I should have asked the question already but frankly money was the last thing on my mind going into this.
Everyone, peace and blessings for a great week ahead.
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Cindy Anne- Call and talk to Heidi. It was a busy week when I was there too and the rate was over $500 a night at Windsor Court but with the centers discount it was far less.
Opt4life- if they balance bill it could be a lot. You may be able to negotiate it down though. Good luck with it!
Outdoorsy- here’s a link to a talk by Dr Dellacroce (he’s one of the NOLA docs that trained under Allen and pioneered SGAP back in 2005) that mentions PAP flaps. It’s at about the 12 minute mark. He makes some really good points on both it and TUG flap too. I’d personally stick to SGAP and DIEP.
https://m.youtube.com/watch?v=lGmoI21Tfbc
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Cindyanne, may 1 was the date they originally gave me! I told them no way...as this is jazz fest time in New Orleans !! You may want to ask for another date.
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When is your surgery Dawnann? I need to correct the list up top.
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May 15th @ nola
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What a difference a few days make! Back pain is so much better which makes everything much easier to do on my on.
Gotcha Dawnann, I missed your date change but I fixed it. I know it’s nice to have a plan:)
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TWills - Thanks for the warm welcome, and I'm glad that your back pain is subsiding! I can certainly relate to wanting to do stuff on your own.
Lula73 - Thanks again for the video link.
I found some other recent posts about SGAP on this forum and am starting to wonder if it's a good choice after all. I'm hoping buttock disfigurement isn't the norm.
I certainly like the idea of being able to hide SGAP scars when I wear a bathing suit or my underwear. I'm single, so I can foresee being glad that I could at least hide my scars until I'm ready to show them. PAP would put two scars right across the back of my thighs - and not in the buttock creases (my arteries are too far down for that to happen). But, I also want to have the surgery that will most likely produce the best results and is more likely to "survive" with good blood flow.
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Outdoorsy, you’ll find that people sometimes seek out sites like this one when they’ve had issues so try to take that into concideration when you read some of the topics. That’s not to say it isn’t a concern but sometimes the more negative results can sometimes get clumped together and make it seem like there is more of a problem. It can be hard to weed through all of the info here sometimes.
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Well, I made it though surgery fine today. I am in some pain, but nothing like I expected it to be. It’s an alternating pain between too many sit ups and being kicked by a horse in the chest.
So far, the flap has good blood flow and the goal is to start moving tomorrow morning.
The only downside so far is that the tv in my room is broken, so i’m patiently waiting for the staff to get it replaced.
I’ll try more updates later when i’m on fewer pain meds. I’m not sure this post even makes sense
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You sound great SadieSue, your description sounds very accurate. Hope your tv gets fixed soon, that would drive me nuts. Continued comfort!
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SadieSue09 - We're glad you still have adequate blood flow to your flaps! That's great! Hopefully, they'll get you a working TV soon.
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TWills, glad to hear you're doing better. The 2 week mark is the turning point, I guess.
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Sadie, congrats on being on the road to recovery. Just excellent!
Twills, good to hear about the back pain subsiding.
Lula, I'm sure the bill will be high. I'll not stress about it and find a plan once I know what is owed.
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Outdoorsy, if you don't mind me asking, are you having one or both reconstructed? I only ask because I think I may not have "enough" for DIEP but I am only having one side reconstructed. I have my first phone consult with a nurse from PRMA tomorrow.
Gosh, I hope y'all are all still here through the summer. You will be all healed. Just think of that!
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parachutes - I'm having both reconstructed. At first, I was told by Penn Med that I didn't have enough for DIEP or PAP, but then I had a consultation with Dr. Joshua Levine, and he assured me that I had enough in my thighs for sure. He said that if I wanted a DIEP only, he would prefer to preform an extended DIEP on me - to get the little bit that's wrapped around to my back/past my hips. He also mentioned possibly using 4 flaps (2 from stomach and 2 from thighs) to get enough volume, but I'm not crazy about that idea. If it helps you to get an idea as to whether you have enough tissue for DIEP -- I'm 5' 6", and have purposely gained 15 pounds since last November. I'm currently at 140 lbs and hold most of my weight in my butt and thighs. If you have other questions, feel free to ask me anything. I don't mind at all. I hope your consultation goes well.
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Sadie- so glad everythings going well! Don't be afraid to use the pain meds. No need to suffer.
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TWills- I’m so glad your back is feeling better. I went through that as well. I thought it was because of wearing this binder because when I took the binder off, my back actually felt better. I had a really hard time staying hunched over because I had to force myself to do it. When I couldn’t take it anymore and stared standing up straight, my back ache finally disappeared. Do you still work as a hairdresser?
SadieSue-Do happy you’re on the other side of this thing now. I hope you get your tv fixed soon, or can at least watch something on your phone or laptop. I hope you have everything you need when you get home And are comfortable!
Opt4Life-I had so many different quotes from different doctors and hospitals, in Network and out. It seemed like the doctors were more willing to work things out through payment plans than the hospitals. I hope you are able to make it work for you!
Question on wearing the binder......Does anyone know why we have to wear this binder? It seems to pull on my incision as it slides up. And then I have to use my muscles in my arms to constantly tug it down, pulling on my incision again and putting pressure on my chest when using my arms. The whole thing seems very counterproductive.
Good luck to all of you beauties at whatever stage you are in!
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One more question:
Does anyone still have a deep soreness in their chest? Like SadieSue09 said, “feels like I got kicked in the chest by a horse”. That is exactly it, and I’ve had it since my surgery.
Maybe the fact that I have to keep pulling my binder down is making it not go away? (It also feels so hard-like there is a steel plate in the middle of my chest between my breasts and it is completely numb). The only time I feel better is if I do ABSOLUTELY NOTHING. I have to literally sit in the same place all day or go from my chair to my bed and not use my arms at all. If I do that for a solid two days, my pain starts to subside. But the minute I do something, even lightly do something, the pain comes right back. My husband gave me a Xanax which actually really helped (and knocked my ass out!! Lol!! It's the weakest strength they make!) but they make me depressed the following day so I hate taking them. I thought by the third week I would not be in any pain but I guess that was wishful thinking! I've mentioned it to the PA and my PS but they said it's still too early and to give it time.
Just curious... Is anyone else having this problem or any pain by week three
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mitzi458, I did not have that issue, so I can't comment on it. I'm sorry you're in such pain.
Parachutes, since you're only doing one side and worried about having enough abdominal tissue for the DIEP, ask them about a "stacked DIEP." That's what I ultimately did after being told by the first PS I saw that I didn't have enough for a DIEP without downsizing my other breast. I sought other opinions and learned the stacked DIEP could work for me. It's only an option for unilaterals.
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Mitzi458, I am right here with you. My chest (not even talking about my breast pain) is so sore. This Thursday will be my 3rd week post op. I too don’t want to move...just sit in my chair. I dread going to bed at night because of the ritual I have to go thru and then I am still not comfortable. I too take Xanax at night...very low dosage. If you are feeling drugged the next day then consider taking it earlier in the evening before you go to bed.
Back to the chest soreness...if you watch a video of BMX with DIEP Flap reconstruction you will notice that there is nothing tender and gentle about that surgery. In fact, it is really rough how our bodies are handled during surgery. This is not an insult to the team working on us. I have been told by an acquaintance that is a surgical nurse that during any surgery it’s kind of like working under the hood of a car. I was told that years ago so it’s not specific to just our surgery. So I believe we have deep bruising in our chest muscles that will take time to heal.
I have this feeling in my chest, right about where my cleavage is, when I eat or drink anything cold or hot I can feel it going down my esophagus right at that location. Sometimes it’s painful especially with something cold...I describe it like a brain freeze when you eat ice cream too fast.
I have a lot of pain under my arms. The tissue is very hard. Any bra that I wear, even a camisole hits me right at that sorest place. I go back to my PS tomorrow to get the stitches out of my belly button and to learn some massage techniques and to get some cream to help all the sutured areas heal.
I am feeling depressed even though I am on anti depressants because I thought I would be more mobile and active. It’s not fatigue that is limiting my activity it’s pain. I am so tired of the pain. I alternate between Tylenol and 800 mg Ibuprofen. I finished Oxycodone a week ago and did not request a refill. It really didn’t do much for me.
Thanks for letting me vent and whine. Even with this painful recovery I am still satisfied with my decision to go with BMX with the DIEP reconstruction.
Blessings..
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In regards to the question about wearing the stomach binder...my PS explained that when our abdomen is pulled back together after harvesting the fat tissue and the veins, that there are many layers of stitches internally. Also, even with the drains, it’s so important to get any left over fluid out of that surgical area or it won’t heal and then we have real problems. So as uncomfortable as the binder may be it is vital that we wear it. I wear a sports bra and then a camisole and then the binder. It does make it a little more comfortable not to have the binder against my skin.
I do get tired of feeling so bound up. Sometimes when I get out of the shower I lay down on my bed with nothing on just to get s few minutes of relief
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on the binder-definitely wear a tank top or something underneath it. I also found that flipping it over so it was “upside down” from the way I was put in it after surgery helped tremendously. With that flip it came down partially over my hip scars (about 1/2 way down my hips). Very little ride up with those changes. Hope this helps!
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Recovery - Day 2
It was a prettly sleepless night last night because of the hourly flap doppler checks. But, i was able to get up and sit in a chair today for a few hours while my family visited. I also had my maintenance fluid IV and catheter removed.
Eventually, sitting in the chair exhausted me, so i am back in bed now and hoping to get some sleep tonight. I’ve asked for some sleep meds to help.
Pain has been constant, but manageable with a low dose of Percocet every 4-5 hours.
Tomorrow i will be up and walking around the floor a few times.
Overall, this has been easier than i imagined.
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SadieSue09, sounds like you are doing very well. I am sure you will get some sleep tonight. Blessings for a continued excellent recovery
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quick question for those that have already gone through the procedure...Did any of you have low blood oxygen readings? I am not talking about the flap oxygen readings, but the one they take with the finger clip.
My last reading was around 80% and I have been on and off oxygen today.
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Sadie-seems like I did after stage 1. I hate those oxygen canulas. Frankly I hate anything up my nose. I ended up with very dry nasal passages and had to get some saline mist for them. Pretty sure this is normal.
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Check out marsupialpouch.com So comfy! I had drains three times and I bought two.
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SadieSue09, I had problems with oxygen with my lumpectomy and my BMX. I wasn’t breathing deeply because I was bound up tight from my abdominal binder and the sports bra that was two sizes to small...not to mention how swollen I was from the surgery. Breathing deeply wasn’t something I was focused on. My sister constantly alerted me when my O2 levels dropped below 90. At about 87 the alarm would go off. It is important to do the breathing exercises because with our surgery we were under anesthesia for a long time. If we don’t get that stuff out of our lungs then we could be at risk of getting pneumonia
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Has anyone done delayed reconstruction? I had my BMX in December of 2016 and am just now looking for reconstruction.
Dawnann--Thank you! I really don't know why I didn't realize that was jazz fest. Of course I called first thing Monday and am still waiting for a call back. That really is frustrating!
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hi I just recently found out my cancer is back,it’s early but they have to do a mastectomy because of previous radiation. I will have to have delayed reconstruction which I’m so sad about I was hoping to keep my nipple. For those of you who had to wait how long do you have to wait. What did you do in the meantime I’m scared and sad. Have already had 2 lumpectomies and breast reduction to match them up and damn it I like my breasts how they are.
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UofAgirl--
I am so sorry to hear about your recurrence. Mine were fifteen years apart and it is tough. My first was lumpectomy and radiation.....this time BMX--chemo--herceptin and again radiation. My BMX was 12/07/2016. I have been flat since that time. Reasons are no OR time at time of BMX--radiation a second time on the same side I use prosthesis sometimes. Many women are able to have reconstruction at the time of their mastectomy. Your team should guide you through all of your options.0 -
UofAgirl we too are really sorry to hear about your recurrence, and all that you now need to go through. Your breast reconstructive surgeon should be able to answer how long you will need to wait, and what your best options are.
For that in between waiting time, you many want to think about getting prosthetics.
Here is also a bit of information on immediate vs. delayed reconstruction When is breast reconstruction?
Hang in there, we're here for you!
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UofAGirl- so sorry you’re having to through this again. Since no rads this time why are they saying your Recon has to be delayed? Seems strange.Also you should be able to do nipple sparing and just have expander put in if you do indeed need to delay recon. Do you know where you’re having it done yet?
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cindyanne, I hade my bilateral mastectomy done late Nov 2016. Had tissue expanders in place as "immediate reconstruction " ha! What a joke. This is what I should have done last year. Better late than never. Nola here I come!
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Good luck Kahnartist with your surgery tomorrow! We are all cheering you on!
I had my post op and was told everything looks good. I got all 4 drains out and I spoke in a new language when they took the tape for the wound therapy off of my abnomen though, wowzer that was painful. So glad I had it though, they told me my incision would have to be aggressive to get enough tissue and it is. It goes around the sides of my hips since they needed a bit of that tissue too. No pain there or in my breasts though. Strangely enough and I was actually told this but my former radiated side looks better and has a better shape and feel than my unaffected side. I had nipple and skin sparing back when I had my BMX Dec 16 but the radiated side nip and some skin had to be removed during this surgery because it just wouldn’t have been viable or symmetrical because of the tissue damage. I was sad about that but I’m totally ok with it now. For me it was the idea of it more than anything. I still have a lot of healing to do but in clothes I look perfectly symmetrical. No bra for 8 weeks and they want me to wear spanx to help with swelling.They told me to continue with the walker until week 4 post op and then I can start short distances without it. They said that week 4 is when most people have issues with the abdomen incision because they have started to feel better and try to do too much. Hope everyone is doing well:)
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Kahnartist, Wishing you well on your surgery tomorrow! Looking forward to hearing from you soon. I'm a little envious..wishing my surgery date was nearer. This waiting is killing me!
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hi I haven't been checking in much but have been following along. I am about 4 weeks out now and finally got my last drain out!!! Have been having some healing issues on my abdominal incision so will need some extra care. Pain is definitely still there but Manageable.
Cindyann- I had delayed reconstruction. My mastectomy was June 2016. I had reconstruction at that time but lost it almost immediately due to an infection. So I have been flat until about a month ago.
Wishing everyone well on their surgery, surgery plans and a speedy recovery.
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Thank you Bella and Lula!
Bella, I’m so sorry you are having so much pain. You can whine and moan all you want! That’s what we are here for! I hate that you are in pain, although at least I know I’m not the only one so I won’t keep worrying that something is wrong. My pain goes back and forth between a deep soreness and a heavy burning. I hope this goes away soon because it's constant and that is really getting annoying. I don't have family here, and my friends are all busy...so when I feel like I’m doing too much, I think about it being impossible to have someone just sit here with me for hours and hours, getting me water, fixing pillows, putting up the recliner footrest, opening or closing my blinds, getting my computer or book or magazine, cooking, cleaning, laundry, etc, etc, etc. There are a million little things we do all day long so how is someone supposed to be there doing all of those things for us? I don’t get it. I'm trying to stay positive though! I hired cleaning people today so I didn't have to clean, but we had a flood because one of them left the water running in the bathroom too long! I had to hoist myself up on top of the dryer in the laundry room and get towels and rags and things while she was trying to stop the water flow because it was going everywhere! It went through the floor into the floor below and then THAT floor flooded so the other lady ran down there with a bucket!!! It was pretty crazy so not sure if it was worth it or not! might just be easier to clean myself! hahahaha 😂
Anyway...Everyone else seems to be having a pretty easy time of this so I thought maybe something went wrong with my surgery. My PS saw me 10 days post surgery to remove drains and said everything looked good. I have to wait three weeks to see him again. He didn’t seem concerned about the pain at all.
And thank you Bella, for the info about the binder and why we wear them. I get zero info from my PS so I honestly do not know what I would do without you girls. It seems easier to peel a grape with my teeth than to get info out of my PS. He is a man of few words now that the surgery is finished.
Lula.... I had to go to work yesterday and tried spanks under my binder but I realized I need the spanks that go all the way up to your breasts or it’s even more uncomfortable. Maybe I’ll try a tank top like you said, and hopefully it won’t keep sliding up. I also turn it upside and and right side up and it does the same thing. I’m very short waisted and to be honest, I’m not even sure where it’s supposed to be sitting anymore. Right on top of the incision or on my waist just above the incision? In any case...You have a lot of good tips! Thank you!
I asked my PS’s assistant about Stage 2, which he will not even consider doing until the third month post op. But she said he WILL NOT discuss it at my next appointment...he WILL NOT even discuss it until right before we do the next stage. That seems weird to me because I’m SOOOO DIFFERENT on each side and the further away from my surgery I am, the more obvious the difference.
TWills! So happy you are doing so great! You will be back to normal in no time!! Are you going back to work at some point or are you taking a long time off?
SadieSue09- My oxygen was super low because it hurt so much to breath I could barely get the little ball up on the spirometer. They kept telling me to take deep breaths but it was SO painful. I made myself and luckily by day 4, I was able to start breathing deeper. Just push yourself as much as you can as it's really really important to keep your oxygen levels up.
I have to admit the thing I miss most, and the hardest part of this, is NO COFFEE!!!!!!!! I hope one more week!!
One more question...is anyone else being hit up to write Yelp reviews??? First my PS asked me to write a Yelp review for him. Then the Recovery enter where I went for one day emailed me and asked me to write one. Then the private nursing company who sent someone in one day texted me, then emailed, then called me, asking me to please write a positive Yelp review. It's really weird!!!!! Maybe it's just a Los Angeles thing!!!??!!🙄
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ha! No one asked me for a Yelp review, at least not yet.
I was able to go home from the hospital on Thursday morning. Everything was looking good enough, so no need to keep me there. i will need to have a small procedure to adjust the flap next week, but it’s outpatient and should be quick.
As far as pain is concerned, it’s mainly in my back and gets worse the longer I stand up. Muscle relaxers don’t seem to really touch it, but I am trying to gently stretch through it.
I am much more frustrated with the healing process than I thought I would be, but the only way out is through.
I hope everyone else’s recovery is going well. For this still waiting for surgery, you’ll do great!
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Mitzi-I wore it so the incision line was at about the 1/2 way mark on the binder width. Just high enough that it didn’t impair my ability to walk/sit by being too low across the bottom.
Kahnartist-good luck tomorrow!!
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Mitzi458, wow, I have never been asked to do a yelp review by any health care provider! Seems crazy!
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cindyanne, are you sticking with may 1st surgery date?
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Well, as far as the Yelp reviews go, I decided, at least with my PS, I will say, “I cannot give my Yelp review until we are finished with Stage 2. And I won’t discuss it until then.”
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Dawnann--I moved it to the 4th which is great because we miss all the weekend crazy. Excited and nervous at the same time!
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I know! Me too! It's going to be great to be getting closer to "normal".
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mitzi458, my husband and I had just moved to S FL a year and a half before my diagnosis and I was traveling back home to N FL(6 hrs away) every 5 weeks to do hair, I kept all of my great clients mostly color clients and I’d work 10 hours or so a day for 3-4 days in row to get them all done so I had to give that up. I referred them all to a few stylists at first because I didn’t know exactly what my treatments would be and they are waiting patiently for me to come back, not sure if I’ll start that up again. I miss them all terribly and don’t really want to start over down here so I’ve basically just been trying to get through all of my treatments and surgeries and I really can’t see past all of it yet. This surgery was a big milestone so maybe it will become clearer what I should do soon.Have you been able to continue working?
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hello all.
I’m on day 4 in the hospital. Had the deep flap Friday and overnight they lost Doppler blood flow sounds so we went back in the OR.
They still can’t find it but the flap is not cold, but cooler. So... tomorrow my ps comes to check but already put me on the schedule tomorrow afternoon. Even if it looks better he will want to explore again and told me he would remove a little and see if we have blood flow and keep doing until we do...so the result is I can end up flat on the left. I did this because I wanted them to finally match so this has been really awful to reconcile that the goal may not be achieved and this will not be the end of my reconstruction journey.
I will keep you updated. I’m bummed and annoyed and sore and unhappy at the moment
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hang in there, kahnartist! He's going to do everything he can to save that flap. All hope is not lost yet!
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So sorry you are going through this Kahnartist, sounds like they have a plan and I'm sure you are in good hands:) Sending healing thoughts your way.
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Kahnartist, so sorry that you have to deal with this. Sending gentle hugs and blessings your way
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Kahnartist, you have every right to be angry and disappointed. As TWills says, you are in good hands though. I know in my area there are lots and lots of plastic surgeons but few practices who do DIEP. The ones who do have to know their trade very well.
Your PS will figure out what's going on and fix it. Keep your head up (literally and figuratively).
Peace and blessings
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Kahnartist, I know you must be feeling anxiety about this. Keep positive. I have my fingers crossed for you, my Chicago sister!
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Kahnartist - i've Been thinking about you today. I hope everything is going well as your PS tries to isolate the problems.
I hope everyone still in the recovery phase is doing well. I am 9 days post-op currently. My biggest source of frustration is with showering. The entire process wipes me out. Other than that, recovery is going well. I am scheduled to see my PS on Thursday. If theyagree to take at least 1 of these 4 drains out, I will be over the moon.
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Kahnartist, I hope they can save it. Mine isn't until July now so I have lots of time to read about everyone. I am very encouraged by the replies very one is posting about their recovery. I am a bit relieved my April date was postponed and I have 1/2 the summer to enjoy before my turn comes again. I read where some of you are not allowed to drink coffee??? I am not sure I can do without my coffee. I drink it all day long and even take it to bed with me. Why can we not have coffee?
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I think coffee (caffeine) causes blood vessels to constrict, which can cause problems with the newly created vascular connections for DIEP patients. However, my surgeon did not ask me to cut coffee out and they actualy let me have some in the hospital during my stay.
Everyone’s surgical teams are different though
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Just joined group, not sure how to input info. Planning on DIEP in August. Sounds pretty scary from the posts I have been reading on here.
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I am trying to figure out how soon after DIEP I can go back to work.
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Welcome mrslaariz! Just my perspective, but DIEP is kind of like having a baby. In the thick of things during labor you're all like what have I done? Why did I do this? Then after it's over the memory of labor is not as intense and starts to fade and the reward was worth it. We are early into 2018 yet so a lot of us are just starting our DIEP journey and you're not getting to hear the other side of things yet. And we get very real on this thread right there in the thick of things. I am on the other side and for me it was all worth it. 6-8 weeks is the usual minimum time out of work for stage 1, and 2 weeks is the minimum for stage 2.
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kahnartist: I am so sorry to hear about your bump in the road. This process is different for everyone, and I havehad many bumps since 2013. Trust your instincts. Sending lots of prayers and good thoughts!
Thinking of everyone and their healing processes! I am here for all questions. Best, Lisa
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Welcome mrslaariz.
I have diep surgery scheduled in nola in may. They assure me I will be up and about in 4 to 6 weeks. Yea it's a scary procedure. But so is mastectomy. Ditto for chemo. The difference is, this procedure will bring you closer to your normal pre op condition. I just watched a you tube video that was great. Cathy golden discussed her diep surgery.
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Hello Everyone!
I am new here. This is my first post, though I've been lurking for a week or two. I am so impressed by your courage and your support of total strangers. Thank you so much for being real and for sharing your experiences -- both the good and the bad. That kind of support is one of the real silver linings I've found as I process this whole breast cancer mess.
I was just diagnosed on Feb 12. My mammo showed an area of calcification, and my U/S showed a mass -- both in my right breast. Biopsies revealed that they were both malignant. I had an MRI a couple of weeks ago that found two other "areas of concern" also in my right breast. Left breast looks OK as do my lymph nodes.
Due to the multiple tumors, I've been advised that a UMX is the way to go. I will be meeting with plastic surgeons today and tomorrow to discuss reconstruction -- one has expertise in DIEP and the other in implants. My husband and I are leaning toward DIEP, but I had a few questions that I was hoping someone who has gone through the process could answer. I am not one of those women who is not attached to her breasts. My breasts made an entrance at age 12 and have been a pretty defining part of my sense of self since then. I am working on the whole "I am a soul, I have a body," but it is a work in progress and I'm not quite there yet.
Anyway, here goes...
- I've read several accounts of women being happy with their results. Are you "Absolutely happy," or is it a qualified happy?
- I am assuming that any back fat or love handles are still there after surgery. Does it look/feel strange to have new boobs and flat belly, but still have other areas that didn't change?
- Do the scars really fade?
- Has anyone had stretch marks in the transplanted skin? How do you feel about that?
- How long were you unable to drive? What is up with the no driving thing anyway?
- I'm still making my way through this thread, so please forgive me if these questions have already been answered elsewhere.
Thank you all again for your support. I hope I can pay it forward.
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Welcome mrslaariz and cev20 to our community.
You may find some helpful, additional information also here:
We are happy you found this incredible group who will help guide and support you on this path.
The Mods
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welcome cev20! I finished my DIEP journey in Nov 2017. Your post was timely because another woman going through DIEP that I know was just asking these same questions and we looked pretty similar post stage 1. I was reassuring her that they will even out those other areas (waist, hips, thighs) and make you proportional again in stage 2. Please note though that not all PSs who do DIEP offer this and get it covered by insurance so be sure to ask. (If you go to NOLA, they do get it covered.)
We exchanged before/after pics and it wasn't until then that I really looked at my before BC photos and my post stage 2 photos and realized how much better my breasts look after this whole ordeal. I am definitely very happy with my results! Just hate I had to get BC to get them.
Yes the scars really do fade (I'm 1 year out from stage 1 & 4 months out from stage 2 and the tummy ones are not very noticeable at all and the breast ones are still a little pink but mostly faded.)
I tried driving at 4 weeks post-op. I could do it but it was not comfortable. Who knew you used your tummy muscles so much to just drive the car?!? The other parts of the no driving is if you're on pain meds druving is a no-no, and slower reaction times if you're still having any upper body pain especially when using the chest and arm muscles.
If you are eligible for skin and/or nipple sparing mx, definitely go that route. That way you don't have to worry about that stretch mark question. They will basically scoop out all the breast tissue and then restuff the breast skin with tummy tissue and connect the blood vessels (that's a very simplified explanationn just for the record). Have they said if you'll do chemo or rads?
One thing you didn't bring up was UMX vs BMX. DIEP can only be done once. Should something start brewing in the other breast and it needed mx too you'd be looking at a SGAP recon or if not enough tissue there, an implant on that side. Something to consider.
I hope my answers help! Feel free to ask additional questions
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cev20,
A lot depends on your physical make up. Talk to the PS about physical concerns. I had single mastectomy and DIEP reconstruction. Am very happy. Single mastectomy with implant reconstruction will never match your natural breast as well as flap reconstruction will.
My recovery from DIEP was easier than mastectomy. I may be an anomaly. You can search on my user name to see an earlier post I made.
No driving while on pain meds or with drains is a good guide.
I am very happy that I went with DIEP.
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Hello all, I live in Boston and had bilateral mastectomy (left prophalactic - for DCIS in 2001). I had immediate reconstruction with silicone implants as at the time I had two small children who needed me and the DIEP reconstruction was relatively new and little tested. Over the years the implants have never been completely comfortable and there have been a number of infections on the left side with the most recent causing contracture. It is larger, hard and tender. The right too feels tight. I am looking at breast surgeons in the Boston area to perform the DIEP reconstruction but everywhere I look the breast centre in New Orleans NOLA breast restorative centre - seems to be the one of choice and THE centre of excellence for the procedure. I have Blue Cross PPO and the NOLA is out of network - I was told the maximum cost to me if the NOLA centre is out of network will be $7,500. - does this sound right.
I'd be so grateful for any help. I've only moved to Boston in August last year so I have little knowledge of this system here.
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Thank you, Lula73! That definitely helps. I'm so happy that you are satisfied with your results!
I just left the implant guy's office and he made a compelling case. His plan is staged mastectomy on the right to conserve the nipple, then reconstruct with implant; and reduction/lift on the left. He cited surgery time, hospital stay, and recovery to make his case.
My appointment with the DIEP guy is tomorrow. I'm hoping he is as compelling because I hate the idea of one natural and one implant.
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Cev20, did implant guy warn you about the implant being cool to the touch?
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Thanks, Runrcrb! Thank goodness your recovery was uneventful! My main concern is ending up with a matched set, so I'm very optimistic about tomorrow's appointment with the DIEP surgeon.
Also, you guys have me seriously considering investing in a recliner.
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cev20- purchasing a recliner is worth it-just make sure to get one that’s a power recliner and comfy too. DawnAnn also makes a good point about the implants. Cool to the outside touch and cool to the chest wall.
ColettePeter- Welcome to the group! if $7500 is the number Vickie quoted you, jump on it and get on the schedule! The amount you pay is the amount she quoted and they do not balance bill. The docs at NOLA are worth every last penny. Those before and afters on their site are the real deal-I’m living proof and no one does more of these procedures than they do. If you read my reply post above to cev20 that went on the board around lunchtime, you’ll see that I went to NOLA and they do it all. Their goal is that you look as much like your old self (or better) when all is said and done. That includes ensuring your lower half is taken care of as well. It truly is about restoring you.The center makes traveling for the procedure easy as well. If you have any questions, feel free to ask!
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Dawnann, no. He didn't.
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Thank you Lula.
Yes, I am wondering what I am getting myself into but good to know that it is worth it when it is all said and done.
I am now looking for an experienced PS in the Phoenix area.
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Hi TWills-
I have not been working while recovering from my reconstruction but I DID work all through my chemo and pretty quickly after my mastectomies. I don’t know why my chemo was not that bad. I only felt leg aches once in a while but I would go for walks in the hills and I would feel better. I have been a freelance hairstylist for the past 30 years so when I was diagnosed, I still took jobs flying to New York, and doing photo shoots, commercials and music videos here in L.A. I just popped on my wig and went about my life!! Weirdly enough, it’s almost like it’s hitting me backward because i’m having such a difficult time with pain from this surgery.
I’m always a very positive happy person and as my husband says, “the toughest woman he knows”...both which really helped me get through cancer. So I’m trying to be the same with this. I look forward to finally seeing my doctor on Friday.
SadieSue09-i’m Going INSANE not drinking coffee!! I think once they let me have coffee, I’ll be good as new!! Lol! I hope my PS is not one of those 6 weeks guys!!
Kahnartist-Good luck with everything. It’s hard not to be sad about it not taking but aren’t they going to try again? Let’s all hope and pray that it’s something easily fixable and it will take the second time. They will figure something out. And You can always vent in this group. This is why we are here. Sending you the warmest hugs on a second successful surgery.
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I'm boob shopping again today. Hope to have a final plan after today's visit!
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Lula, I didn't realize you were a NOLA alumni. Hearing the positive feedback from you and others has diminished any lingering doubts I had about traveling from chicago for reconstruction. Thank you all for your candor. I only wish I started this process last year. I wasted a lot of time for nothing.
Oh, and here's the deal maker...my insurance is an in network provider. This whole procedure is going to cost me $1350.
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that’s awesome DawnAnn! I think a lot of people in general find traveling for medical treatment daunting. It really isn’t. It just takes a little more planning than staying local. A lot of people wonder why you would travel so far if there was a closer doc qualified to do the procedure. My answer is just because they’re qualified doesn’t mean they’re good at it. When it comes to something like this going to the best pays off. Have they discussed dates or which doctor you’ll have yet?
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Lula, may 15th is my date. Dr Blum is lead surgeon. My ps in chicago, who does diep, (but not many) told me that the docs in nola will do a better job than he could. Of course this came after several revisional surgeries due to problems wirh t.e.'s. Oh, and of course steering me towards an implant restoration. I could write a book.
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Mitzi458-
I am so sorry that your PS is distant and isn't communicating with you. Interesting that he would think that wouldn't make it into the Yelp review. I am having my BMX with DIEP on May 10th after two failed lumpectomies and Bilateral breast reduction. Well, not failed, but we removed over 10 centimeters of tissue from right breast and we can't get 2mm of clean margin, so I guess it is a fail in my mind because here we are. My PS has been so wonderful. I can't tell you the amount of time he has spent with me answering questions about all of my options and what ifs. Honestly, if it weren't for him, I don't know that I could feel as comfortable as I do going into this surgery. I understand that these surgeon's are busy but they are getting paid, a lot! Clearly this is why they want Yelp reviews. Well, he is your surgeon and I am sure he is very talented and that matters more than a good bedside manner, but once it is all said and done, a nice honest yelp review might be just the thing that will help someone else make a decision on if they are ok with that level of communication. All of this is hard enough without feeling disconnected from those in charge of your journey! I hope you continue to do well recovering and hoping you get back to ideal asap! Wishing the best for you!
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Second stage procedure planning is coming up. I see the PS on April 9. I have some decisions to consider and would love some input from anyone that has been through this. A couple things to know about my initial surgery:
* I did have some healing issues with some necrosis but only as bad as thickening below the flap, red tissue which I know will fade.
* Overall shape is great other than just below the flap on the inside lower area the scar tissue area is a bit thicker and comes out a bit more than the flap, so it isn't a perfect shape. When I saw my PS last in January, he said in order to get rid of that area he would need to really reshape things a lot and reduce the breast by quite a bit which he does not want to do as the 'footprint' of the breast shape is so darn close to my existing breast on the right.
So hard to describe this without images but I hope you all know about what I am saying. I am unsure if nipple reconstruction is the way I want to go but maybe that would 'hide' the shape issue? I was told that when they create the nipple it is basically always 'out' and due to the fact that I only had a unilateral mx, wouldn't that look weird? Has anyone else had a unilateral mx and gone ahead with the nipple reconstruction and like it?
We are also looking at just adding some fullness to my right breast via fat grafting. Initially we had talked about a lift but both breasts sit the same and the only real difference I can see is the reconstructed one is just fuller. Can anyone offer what to expect from fat grafting? If you have had any? Just injections of the fat and not a new surgery. (I guess basically lipofilling is the best terminology for what we are doing)
i appreciate any thoughts! Thanks.
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Kahnartist, how have you been feeling? Did everything get resolved with your flap?
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Hello Ladies. I wanted to start by saying thank you for your guidance. I was able to ask questions that I would have never known to ask if it weren't for this group.
My husband and I met with the DIEP surgeon yesterday. He explained the procedure and the recovery times (which honestly seemed a little ambitious based on the experiences I've read about here). I knew to ask about plication thanks to you all, and yes, he does do that. In fact, he said he does it on two layers during DIEP versus one layer during a regular tummy tuck. He said he has even had some success reconnecting nerves, which would mean having sensation! The consult went great, or at least he told me a lot of what I wanted to hear.
We are moving forward. My preop has been scheduled for 3/28, and my first surgery (lumpectomy/reduction/lift) will be on 4/10. UMX/DIEP is TBD.
I'll share my experiences as they happen in hopes that they can be helpful to anyone else who is coming down this path.
Thanks again for your sisterhood.
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Hello everyone, I’ve gotten a bit behind so I’d like to welcome all of our new posters:) I hope every one is healing well from surgery or feeling prepared for your upcoming surgeries.
I’ve been thinking of you Kahnartist and I hope all is well.
Bella, are you feeling any better? I hope you’ve found some relief.
I had a blood clot scare earlier this week but it ended up being a hematoma at the site where they gave me a shot during my hospital stay after surgery. I also have a small area under one side that is slow to heal, they don’t seem to concerned yet and they’ve told me how to deal with it. This is when I’m glad I don’t live too far from my Dr. I also very ungracefully slipped while getting out of bed this morning. First thing I did when I landed was grab my boobs, lol, like they were going to fall off. My poor husband had no idea what was happening, what a way to wake up. I said some bad words for sure.
I’ve noticed how different all of our recoveries have been and I’m sure it’s because we are all at different stages. I had my BMX just over a year ago and then Tissue expanders put in and then one taken out so I’m really numb from those surgeries so I’ve had less pain because of that. Also, if you’ve had radiation and you have to have the skin replaced as well adds another layer to the recovery. Same with skin and nipple sparing or not.
I guess my point is that there are so many factors that contribute to the healing process so keep that in mind.
Let me know if I need to add you to the top or change a date!
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cev20 - what type of recovery time did your DIEP surgeon quote for you? One thing to keep in mind is recovery times and experiences vary wildly from person to person.
Based on the stories i had read, I was worried about recovery time as well. I had a UMX with immediate DIEP reconstruction on March 12th. I feel like I really turned a corner about 8 days out from surgery and now I am starting to feel much better each day. I have no doubt i’ll be back to pre-surgery shape (minus the cancer) by the end of 6 weeks.
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I believe there is a difference in recovery time for someone having BMX with DIEP Flap reconstruction verses someone having a UMX or having a mastectomy at a previous time and then having DIEP Flap at a later time.
I am one month post op from BMX with DIEP Flap reconstruction. My journey is similar to those who had the same surgery and somewhat different from those who had mastectomies previously and are now doing DIEP Flap reconstruction. At 4 weeks post op I am not driving yet because my abdomen is still weak and my reaction time is not as sharp. I think age is a factor in recovery time also. I am 61 so I won’t recover as quickly as someone in their mid thirties or early forties.
Blessings for an excellent recovery and miraculous results
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Hi Camstr835,
I'll be in Boston having my surgery on the same date (4/17), stacked DIEP. I'll likely end up an A cup - was told to try to gain weight just a couple weeks ago when we decided on this, but of course when I'm supposed to gain, I am losing (lol -anxiety). Anyway, I'll be thinking of you and everyone else...and have so appreciated all the advice, support and encouragement found here. Thank you all.
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