2018 DIEP Surgery

Lula73

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.

simbobby

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?

Teaberry11

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. ❤️

bella2013

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.

suburbs

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.

TWills

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.

SadieSue09

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

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.

TWills

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:)

TWills

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!

Teaberry11

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!

Leatherette

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.

TWills

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

TWills

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!!

TWills

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!!

cindyanne

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.

Elijahgirl

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

MommaGin

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

Teaberry11

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?

Elijahgirl

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

Elijahgirl

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

TWills

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!

lifewins

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

MommaGin

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.

suburbs

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.

MommaGin

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

MommaGin

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

KimE

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.

georgiaredskin

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!

bella2013

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

TWills

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!