DIEP 2015

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  • cfm123
    cfm123 Member Posts: 9
    edited June 2015

    ssteacher I had four drains. Two were removed before being discharged from the hospital and two were removed on my 14 day post-op appointment. The removal in the hospital hurt, but the removal in my PS office, well, I felt nothing at all! My PS did not allow me to shower with drains. I did a sort of improvised bathing with disposable baby wipes, soap and water. I had my hair washed at the salon down the street. I was permitted to shower on the day after my last two drains were removed and it was awesome!

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Cfm123, I was told by PS not to try to lift arm above shoulder for 3 weeks. I found it painful to get that high! When I got the all clear I put a piece of painters tape on my doorframe and marked every few days how high I could get my arm- it was great motivation and forced me to keep doing exercises! I only had one node removed this time but I found I had a lot of swelling in the armpit and it felt very deformed for quite awhile but feels normal now- had surgery March 10.

  • cfm123
    cfm123 Member Posts: 9
    edited June 2015

    mary625 I'm sorry that you're not feeling great. You mentioned bread and sweets - not sure if you know that cancer cells are obligate glucose metabolizers, which means that healthy cells get their energy from oxygen but cancer cells they get their energy from glucose. Bread and sweets become glucose in the body. Because of my history with cancer, I don't touch sweets. I follow the program in Dr. Fuhrman's book Eat to Live. Basically a pound of cooked vegetable, a pound of raw vegetable daily, and stay away from sugar and simple carbs. It's not strict and I think anyone who tries it will feel wonderful.

  • cfm123
    cfm123 Member Posts: 9
    edited June 2015

    slv58 Super reply! thank you so much! I was trying to lift it for the past two days and it got really sore so I decided to give it a rest. I am 17 days out from surgery. I had two lymph nodes removed. So appreciate your insight and advice. I will do with the painters tape after the 3 week point. Do you feel your range of motion in the arm on the dissected side matches the range of motion on the other side no? March is pretty recent, how wonderful that you are doing so well!

  • cfm123
    cfm123 Member Posts: 9
    edited June 2015

    Hi Dogbiscuit

    I had uni-DIEP a little over two week ago.

    Yes it's true, they move your belly button. Mine looks perfect, no visible scarring, I don't know how they do it, it's incredible. I wish it was placed a little higher though. I should have discussed that with my PS pre-op.

    The abdomen scar is huge! It's hip to hip and curved like a smiley face. You can google DIEP images to see online pics and illustrations. I was bummed about the size of the incision, but my PS worked with me to try and get it below the bikini line so that I can still wear a two piece. The actual placement of the incision will be determined by where your blood vessels are. They will scan you in an MRA to locate your best blood vessels before surgery, and the location of those vessels will determine the height of the incision.

    The end result is a tummy tuck, and I was required to walk bent at the waist for 2 weeks following surgery. I used a walker to relieve the burden on my back (I am 46, don't usually use a walker!). I understand some people must walk bent for longer - it depends on you doctor's instructions.

    Getting up and down is hard but gets easier every day. In the hospital they got me up and in a chair and walking with a walker the day after surgery - I mean I was not zooming around, I was feeble, but it felt good to be on my feet. Once home some people use recliner to sleep in, but I followed someone else's advice (from this discussion group I believe) and used wedge pillows. I used these two and loved them. Created the perfect angle at the waist and helped me in getting up and down.

    http://smile.amazon.com/gp/product/B008GQ04S8?psc=...

    http://smile.amazon.com/gp/product/B009HHLBKK?psc=...

    I also had extra pillows around to tweak my set-up.

    The main thing in getting up and down is to use that good arm as much as you can. The idea is not to strain the abs. I had surgery on the right and am now sleeping on the left side of the bed so I can use my left arm to push up and swing leg over.

    My PS will not let me do focused ab work, such as sit-ups, for 3 months.

    I find coughing painful, and sneezing hurts like crazy. The nurse told me to hug a pillow tightly if I need to cough or sneeze, but usually the sneeze comes before I have a chance to grab a pillow.

    The weirdest thing at this point is trying to walk upright with this tight tight skin across my abdomen. My tummy is flat as can be, I'm just trying to fit into it.

    My best wishes to you.

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Cfm123, I would say that my rom is pretty much the same but I do feel some pulling in the underarm and the side of my breast when my arm is extended completely up. I've started to regain some feeling at the side of my breast which surprised me as the grafted fat is there.

    Don't push yourself too hard and ask your surgeon for their opinion. Mine told me that if I wasn't happy with my Tom recovery that she would refer me yo a physical therapist, but I don't think I'll need that- I keep doing normal things with my affected arm and seem to be managing fine!

    I'm feeling really good (despite going through chemo now) and can't wait for stage 2 but won't be able to do it for awhile- scheduling and I have to wait at least a month after chemo. Unfortunately my new breast is a cup smaller than native. So I'm looking at a lift and reduction. I've also got 2 dog ears at abdomen and one at breast from excision of prior LX scar that need attention, but overall I'm very pleased with results.

    Hope your doing well, it sounds like it!

  • avmom
    avmom Member Posts: 324
    edited June 2015

    Good evening, all. I can't express fully how happy I am to be posting to this group, but it looks like I will be having DIEP surgery some time in the first week of September.

    I've been following this board in thehope that I might be able to join you all.I had a biopsy December 23, 2014, and a uni mx on January 13, 2015. Because neither mammography nor ultrasound picked up on a large area of DCIS, and my tumour didn't ever present as a palpable lump, my BS and my MO both recommended a mastectomy on the other side, as surveillance would be a problem. I saw my reconstructive surgeon last week, and I see him again in early August to set a final date for the other mastectomy surgery, with DIEP reconstruction at the same time, provided that the RO didn't recommend rads. I saw the RO today, and he doesn't recommend any radiation, so after my last chemo next week, I just need a couple of months of recovery, and then my surgery can go forward! I am so looking forward to moving beyond the intense treatment phase of this awful process.

    I was very lucky to get great range of motion within a few weeks of my mx, despite having 11 lymph nodes removed, but everyone is different. I was very diligent about doing the recommended exercises, though I find I still have to do them, or else I feel very tight.

    I was experimenting with the Eat to Live regimen before I started chemo, and I agree that it is very doable. That's gone by the wayside during chemotherapy, but I intend to go back to it once chemo is over and I can taste things again, and my tummy is back to normal. Right now, I have zero appetite, so I eat on a schedule, and I eat whatever seems the least repulsive at the moment. Lots of protein, though.

    For now, I just have to get through the last dose dense taxol, next Tuesday.

  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2015

    Susanella, my post op instructions were to NOT raise my arms higher than shoulder level for three weeks so as not to put stress on the anastomosis (where they joined the blood vessels up)!!

    After that you just keep working on range, slide you arm up a wall, or lying on your back using a cane etc to raise your arms gradually further.

    Certainly if you had lymph nodes removed it takes a bit of work to regain range. They say you should aim for full range in about 6 weeks post op, but I don't think my left shoulder range will ever be full, after three surgeries plus radiation :(

  • Brandi999
    Brandi999 Member Posts: 143
    edited June 2015

    Hey everyone... I have been largely avoiding the forums for a while now due to depression and pain but things are quite a bit better now. I had the DIEP flap bilateral and had the perfect ones to avoid the T scar. I just have circles on my boobs, the new belly button and the abdominal incision. I had 12 lymph nodes removed and 3 tested positive. Since I never finished my chemo I have reluctantly agreed to do rads but NOT happy about it. I also have a hematoma that covers the left side of my abdomen. I called them freaked out saying it feels like I'm pregnant on one side of my body. At the time they were unable to aspirate anything but it was draining out the one drain hole that was still open. Unfortunately that is now closed so it feels like I have a balloon stuck inside of me and pushing all my guts out of the way. NOT comfortable. The other side is amazing. My new boobs are amazing too. I have soreness in my armpits and general bruised feeling from neck to abdomen. I ended up getting some of those fuzzy seatbelt covers. I'm so glad I can drive again. Just waiting until I'm cleared to lift more weight. I'm debating weather or not to work during rads and wondering about other people's opinions. I normally work 12 hour night shifts as a home health nurse.

  • caligirl3
    caligirl3 Member Posts: 86
    edited June 2015

    Trinity: Thinking about you. Hope all went well with your surgery. Please update when you feel up to it. Wishing you a quick easy recovery.

  • caligirl3
    caligirl3 Member Posts: 86
    edited June 2015

    Brandi: I'm sorry you are having such a rough time. I'm glad you are starting to feel better. I did not have rads but now that I'm back working 12 hour shifts, it's been tough! If you can take more time off during radiation ( especially with all you've been through) would probably be a good idea. Wishing you an easier recovery with your upcoming treatment.

  • Trinity0723
    Trinity0723 Member Posts: 110
    edited June 2015

    Just had my surgery and am home now. Does anyone have any suggestions for my first shower? Thank you

  • websister
    websister Member Posts: 1,092
    edited June 2015

    Hi Trinity

    I had obtained a shower bench and am still using it two weeks out from surgery (though planning to put away after last drain is out) - so helpful to be able to sit while washing/shampooing. If you still have drains you can place on bench beside you, otherwise I have heard of people tying pantyhose around waist and pinning drains to those while showering.

    For steri-strips, gently pat dry after shower.

    The first shower really tires you out. Don't be too ambitious re: hair/make-up - every day gets better

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    I used a shower bench as well and found it extremely helpful to fit. I was able to pick one up that was inexpensive so didn't mind that it wasn't used a lot. Probably will use it after stage 2 for a bit.

    Don't overdue yourself Trinity, take it easy and if your tired a sponge bath will do! Each day does get better but allow yourself time to heal.

  • Trinity0723
    Trinity0723 Member Posts: 110
    edited June 2015

    Thank you for your suggestions. I think I'll get a chair too

  • mary625
    mary625 Member Posts: 1,056
    edited June 2015

    I always used a lanyard (the things that hold badges at a convention, for example) to hold my drains while showering. I put a large safety pin through the nylon tabs and hooked them to the lanyard. I usually stood up, but I also had a built-in shower bench.
  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2015

    I had a shower bench, but actually didn't use it in the shower. I sat on it to dry myself when I came out. I seem to remember after my first shower I was pretty exhausted and didn't try again for a couple of days! It did get easier each time after that, and I only had my hubby help that first time, although I had him on standby for a few days.

  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Isn't it amazing how tiring a shower could be after surgery! Even with a bench I was wiped! Gladly each day gets better!

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2015

    It takes so long to button up after a shower, but that nap with clean hair and fresh bandages is pretty glorious!

  • jbdayton
    jbdayton Member Posts: 700
    edited June 2015

    I will get my drain out tomorrow and a full shower on Wednesday. Looking so forward to this.


  • Trinity0723
    Trinity0723 Member Posts: 110
    edited June 2015

    Wanted to let y'all know how surgery went. I had surgery last Tuesday. When I woke up I was in soooo much pain. I have a very high tolerance to pain meds which we knew going into surgery. I don't think we footy it controlled until Thursday. These first thing the Dr said to me was are you sorry you had surgery yet? :-) My biggest problem was a migraine that I had since recovery that wouldn't go away. Friday I started feeling better answer am doing so much better than I expected. Honestly my chronic back pain is much worse than they pain from the surgery. I feel really good all things considered. I hope those might giver others hope that their recovery will be so much easier than expected.

    XOXO Trinity

  • mefromcc
    mefromcc Member Posts: 188
    edited June 2015


    jbdayton, yahoo for drains out! Your corset stays are out! Or, is corset rods more appropriate.😳

    trinity, sorry to hear that it took time to get that pain under control. Happy to hear that you are doing well. A month or so after my DIEP, I told the medical student shadowing my PS that it was the worst surgery I had ever experienced. My PS got a hurt look on his face and said "But it's the prettiest you've ever had."

  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2015

    Yeah, well..... They should try being on the receiving end!!! :o

  • Beccanana
    Beccanana Member Posts: 1
    edited June 2015

    My daughter is having deep surgery this Thursday . I would appreciate any encouragement from you. She is 42 years old and had surgery to remove both breast last year and Chen and radiation. Of course I am very tense. Hope to here from you


  • jbdayton
    jbdayton Member Posts: 700
    edited June 2015

    Beccananna you will have us supporting you while you do the hardest job, waiting for the surgery to be over. Your daughter will do just fine, all she has to do is show up, others will do all the work.

    My daughter and husband said it is a very long day so go prepared. Make sure you eat well and walk a lot to keep your anxiety level down. Your daughter is blessed to have you there for her.

    I did delayed DIEP after chemo and rads and I am so glad I did this procedure even though the recovery is demanding.




  • cloudsinmycoffee
    cloudsinmycoffee Member Posts: 10
    edited June 2015

    Beccanana, I'll be sure to put your daughter in my prayers, and from one mother to another, my heart goes out to you. I understand your concern. We always want things to go well for our kids. I myself had the procedure April 15. They gave me as little Fentanyl during the surgery as they thought they could get away with, along with IV Tylenol, and nothing but Tylenol thereafter because I'm allergic to essentially all other pain medicines. I was afraid I'd be in tremendous pain, but I didn't think it was bad at all. I don't think I have read of anyone who was sorry she had the surgery. I just have to keep reminding myself of what my surgeon said to me: This is a process. Most of us, if not all of us, will need at least one more surgery for some "tweaking." I, for example, will be having more surgery July 23, but, of course, it won't be nearly as extensive as that first surgery April 25. Again, I hope all goes well, and I'll send prayers and good vibes your way.

  • cloudsinmycoffee
    cloudsinmycoffee Member Posts: 10
    edited June 2015

    As I mentioned in the post above, I had the diep flap procedure for left breast reconstruction April 15. Thus, it's been not quite 2 months ago. I have a large hard lump at the side of my "new" left breast at the bottom. You can't see it when you look at my breast, but it's very obvious if you press on that area. My surgeon said something about it being scar tissue and instructed me to massage it. So far that hasn't made any difference. If it is scar tissue, I'm hoping it can be removed when I go back to have surgery on the right breast to better match the left one. Has anyone else had that happen? I'm wondering, is it part of the sling used to create the base or bottom of the breast? Also, when I am sitting up, my breast feels soft, but when I lie on my back, my breast feels like a brick. I understand this isn't a "real" breast, but I was hoping it would be similar enough to a "real" one that it wouldn't be repulsive to a partner who touches it. I'd greatly appreciate your input. Thanks!

  • GraceB1
    GraceB1 Member Posts: 213
    edited June 2015

    Thought I'd check in and tell everyone that even if your surgery has complications, things can still work out OK. My surgery lasted 9 hours because of removal of extensive rock hard scar tissue from the capsule around my TE and in my arm pit due to radiation. She ended up using both sides of my tummy in the one flap. As soon as I was in recovery my PS was concerned about the blood flow out of the flap. She ended up removing the stitches so the flap could expand without tearing the stitches open. That still wasn't enough and at 10pm I was back in surgery for another 2 hours. She removed a huge hematoma and stopped the bleeding. I got four units of blood. That morning she ordered leeches from California to be put on the flap to keep blood flowing out. On day 2 post op I was getting two leeches every two hours around the clock. After 24 hours it went down to 2 every 4 hours. I think I had every nurse, intern, resident and quite a few doctors came in to see how it was done. No modesty left at all but it was all my choice. The worst part was the lack of sleep. It took about an hour each time they put on the leeches, waited for them to fill up and drop off and then rebandage Then I'd catch a little nap and then it was time to start over again. I get pretty grumpy with no sleep. It was really gross but some valium helped me get thru it without freaking out. She said the swelling would go down without the leeches but I'd probably have a lot of fat necrosis. After 4 days in ICU and one day on the floor I came home yesterday in pretty good shape. The flap looks good but pretty lopsided at this time. Overall I'd say the belly pain is close to having a c-section and arm isn't too bad unless I try to stretch it too much. I don't even want to think about coughing. I have no appetite at all (too much anesthesia). Just have one drain left in the belly. The shower yesterday was wonderful and she encouraged me to gradually stretch my arm as far as I can. Doctors advise is so different person to person. Thanks for all your good wishes!

  • websister
    websister Member Posts: 1,092
    edited June 2015

    Beccanana - thinking of and praying for your daughter tomorrow - I also am delayed reconstruction past chemo and radiation. My surgery was three weeks ago and I am doing really well.

    Cloudinmycoffee - re: hardness of breast/flap when lying down - I would ask your PS - I am three weeks out and my flap side is soft and does feel like a 'real breast' when lying down

    GraceB1 - wow, you went through a lot with your surgery! Thanks for sharing, glad you are now home and recoverin

  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2015

    Websister,

    Glad to hear you are doing well!!

    Everybody: I'm going away for a couple of weeks, so may not be able to do updates etc. I wish everybody well with current recoveries, and upcoming surgeries

    Hugs to all :)

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