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2018 DIEP Surgery

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Comments

  • MarinaCat
    MarinaCat Member Posts: 7
    edited February 2018

    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

  • moderators
    moderators Posts: 8,637
    edited February 2018

    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...


  • mitzi458
    mitzi458 Member Posts: 33
    edited February 2018


    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




  • mitzi458
    mitzi458 Member Posts: 33
    edited February 2018

    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


  • dawnann
    dawnann Member Posts: 73
    edited March 2018

    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

  • Teaberry11
    Teaberry11 Member Posts: 66
    edited March 2018

    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!

  • carmstr835
    carmstr835 Member Posts: 147
    edited March 2018

    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?

  • TWills
    TWills Member Posts: 509
    edited March 2018

    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!

  • dawnann
    dawnann Member Posts: 73
    edited March 2018

    may 15

    Nola

  • BLynnB
    BLynnB Member Posts: 6
    edited March 2018

    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? :D

    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)))

  • BLynnB
    BLynnB Member Posts: 6
    edited March 2018

    TWills - sending you good vibes and hugs, all the best!!!

    Barbara

  • mitzi458
    mitzi458 Member Posts: 33
    edited March 2018

    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!!

    ❤️🙏🏻❤️🙏🏻❤️

  • TWills
    TWills Member Posts: 509
    edited March 2018

    Thanks everyone!

  • Lula73
    Lula73 Member Posts: 705
    edited March 2018

    warm thoughts and prayers for a smooth surgery today, TWills! 🙂

  • bella2013
    bella2013 Member Posts: 370
    edited March 2018

    Thinking about you today TWills🙏

  • KimE
    KimE Member Posts: 34
    edited March 2018

    TWills - Good luck with your surgery, I hope that everything goes well!!!

  • TWills
    TWills Member Posts: 509
    edited March 2018

    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!

  • mitzi458
    mitzi458 Member Posts: 33
    edited March 2018

    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!!

  • TWills
    TWills Member Posts: 509
    edited March 2018

    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.

  • Casun19
    Casun19 Member Posts: 77
    edited March 2018

    TWills- so great to hear you are doing well!!!

  • mitzi458
    mitzi458 Member Posts: 33
    edited March 2018

    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

  • MarinaCat
    MarinaCat Member Posts: 7
    edited March 2018

    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.

  • Leatherette
    Leatherette Member Posts: 272
    edited March 2018

    Sounds like you are off to a great start, Twills! So glad all went well!



  • bella2013
    bella2013 Member Posts: 370
    edited March 2018

    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.

  • carmstr835
    carmstr835 Member Posts: 147
    edited March 2018

    Twills, that is great news, I hope we all do so well!

  • Hydrangia
    Hydrangia Member Posts: 1
    edited March 2018

    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

  • mitzi458
    mitzi458 Member Posts: 33
    edited March 2018

    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!

  • bella2013
    bella2013 Member Posts: 370
    edited March 2018

    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.

  • TWills
    TWills Member Posts: 509
    edited March 2018

    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

  • parachutes
    parachutes Member Posts: 34
    edited March 2018

    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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