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DIEP Flap Reconstruction 2016

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Comments

  • Katiebird
    Katiebird Member Posts: 35
    edited October 2016

    For those of you who had lymph node removal and immediate reconstruction, did you have a lot of swelling under your arm? How long did it take for the swelling to go down? My sister calls it my side boob because it's just as big as what's on my chest!

  • Simplicity
    Simplicity Member Posts: 723
    edited October 2016

    Morning ladies.

    Thanks Lemint :)

    Dlia, hate to hear that. Do know thou, that as bad as it seems, with proper wound care, it will heal! They don't give very good packing instructions at our PS's office. I was fortunate to have a few nurse friends, one that even came over and showed me how to pack my abdomen more proficiently. If you want me to, or need anything, I am available this weekend. I sincerely wouldn't mind. I feel.....thankful to be in a position after all I have been through with this to have a bc sister close by that I can lend a hand to. It feels good to be able to give back all the support and love I saw in the past 1.5 years.

    With me having such a variance of complications, all wounds are different. I had about 4 different treatment areas going on at once for about 8 weeks? I still use a mirror and did also with the abdominal dehiscence and breast abscess (hard areas to see and pack lol). When you are comfortable enough to do so, I'm a firm believer in the patient getting to know their wound. It helps the patient know where or what to watch, and where any tunnels may be. imo, the Dr's don't look closely as I think they should. Course, they're not the ones who have to pack it daily.

    There is seriously an art to packing wounds. Packing it shouldn't cause pain, a bit of discomfort, but not pain. Given there's no infection anyway.

    So text if you need me. As of now, I don't have any plans set.

    Went to the Dr yesterday and the right breast, bleh, is a bit concerning, but already looks better today. Saturday was bad and it had a dark discoloration and hurt like my 4th week of radiation (my worst week). It is red red red. So he put me back on antibiotics. Also thinks I have another yeast infection on my right breast :( I go back in 3 weeks and we will discuss any other surgeries. I have paid time off that expires in December, so I'd like to get anything else done he wants to before then so I don't lose paid time off again.

    Hope all others are doing well. Overall, looking through photos of past surgeries, I am pleased with the physical appearance today. Going through those complications, there were times I wondered if things would ever look close to normal again. Getting there.

  • Tiggerousity
    Tiggerousity Member Posts: 50
    edited October 2016

    Good morning💕

    Sending healing vibes to Dlia and Simplicity. I hope you will both move quickly through this phase and have great outcomes.

    I've been following YouTube instructions on how to massage my noobs. I may call the PT they recommended if they don't soften soon. Has anyone had experience with hard areas on noobs 5 weeks post op? PS says I think is only swelling.

    This is for all the DIEP sisters here who make a different in each other's lives

    image

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited October 2016

    hi Triggerousity!

    I had a hard spot in my noob up until about 6 or 8 weeks post op. It was swelling but I kept thinking something was wrong bcuz it was so hard. It resolved in its own. Good luck

  • Simplicity
    Simplicity Member Posts: 723
    edited October 2016

    Morning Tiggerousity. Yes, I still have areas of hardness :( I just requested a referral for OT/PT with a lymphadema specialist I know since I had lymphnode involvement. My right breast, the cancer and radiated breast, is my biggest concern. Hopefully she will be able to help get it softened up via light stretching, exercise and massage.

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited October 2016

    Katiebird,

    I had side boob too. It never went away, turns out it's part of my noob. my PS says he will reshape me at stage 2. maybe ask your PS at the next appointment

  • Maya15
    Maya15 Member Posts: 112
    edited October 2016

    Hello all, sorry been slow to update.

    My PS likes to keep people in 5 nights but I talked her into an early discharge on Monday after a 4th night in a tiny room with 4 patients, loud alarms from malfunctioning equipment, a patient vomitting all night, one in groaning pain and the third threatening to shoot herself constantly. It is such a relief to be home!

    For those of you who recommended getting a recliner, I can't thank you enough. It is allowing my back muscles to heal after I did them in getting in and out of a hospital bed. I feel pretty helpless and can't do basic things like bathing or walking unassisted. How long does it take to be able to stand up straight and walk around comfortably?

    Surprisingly for such a big surgery, the pain is minimal and much less than for my MX/tissue expander placement in June. I am 6 days post op and for the last 2 days, the only thing I've been taking is Tylenol, and that's for the muscle pain.

    So for the results... I looked almost totally flat when I was in the hospital and I woke up wondering why I'd put myself through such a major surgery to end up with very little. I asked the PS. She said the breasts start projecting more when you start standing, sitting etc, and that the aim of stage 1 is to get the flap and blood flow in place and then some reshaping at stage 2. Now that I've been moving around a bit more, they have filled out a bit. Not the c-cup I was hoping for, but actually they look very close to the small B I was before. So, I think I could end up being pretty satisfied with the result (maybe?) after stage 2.

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited October 2016

    Well,  I finally swallowed my pride and sent my nekkid-y pictures, insurance card, demographics, and health history off to NOLA. Hopefully, I hear something in the next week.  I'm worried that they may turn me down for the DIEP, due to my body shape and BMI.  I'm pretty round.  Oh, well. If I need to lose weight, I will find a way to do that.  I'm scheduled for a hysterectomy 10/20/16, so I'm not sure how far post-op they'd want me to be before starting reconstruction. I was sorta hoping to get it in before Dec 31, since I'm fully paid up on my insurance out-of-pocket expenses. Nothing like getting a major surgery done for free.

  • Simplicity
    Simplicity Member Posts: 723
    edited October 2016

    Good luck mustlovepoodles! I hope you hear from them soon!

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited October 2016

    Mustlove, does NOLA take your insurance? I thought they didn't always accept insurance. If they do, you sure are lucky!!

  • Tiggerousity
    Tiggerousity Member Posts: 50
    edited October 2016

    Hi mustlovepoodles,

    Odds are it will be okay but I get the weird feeling of being examined nekkid😬. The good part is you will have plenty of tissue to work with!

    Another place I've heard good things about is PRMA is San Antonio, Tx. There is a DIEP FB page that has many women who like the doctors .

    image

  • Simplicity
    Simplicity Member Posts: 723
    edited October 2016

    I'm in that group too Tiggerousity. Very helpful. I am so thankful for support groups like these. Not sure I would have made it without them, without losing my witts (ok yea, they're already gone lol)

    Dlia? You ok?

  • Tiggerousity
    Tiggerousity Member Posts: 50
    edited October 2016

    Okay, my husband is not being supportive any more. Mine has taken care of me perfectly in physical ways but, he is now very resentful. And it has become obligatory. I can't deal with no emotional comfort or support or physical. I'm usually the peacemaker and now that I've stopped it is all going to hell. Help. I don't know what to do.

    Has anyone gone through this

  • Maya15
    Maya15 Member Posts: 112
    edited October 2016

    Oh Tigs I am so sorry. I can't imagine going through that during cancer treatment, though I've been through my fair share of it in the past. We are here for you. Keep in mind that it's the strains of dealing with this disease that drives us crazy, both the patients and the carers.

    Can you try to talk it out, what your needs are and what his are? I lean on friends a lot for emotional comfort and call someone when I lose it. I also try to get friends or family to look after me for a bit so my husband can get away from it.

  • Tiggerousity
    Tiggerousity Member Posts: 50
    edited October 2016

    Thank you Maya, your kind words help me feel less alone. I've got a good case scenario with successful sx and slow growing cancer marker.

    I'm looking more normal so it seems like I should be happy. Well I'm still trying to absorb that I have cancer to deal with, wonky noobs and numb belly. I'm still grieving and anxious about how my life will go.

    He seems to think 'hey, they cut it out so you are done with cancer. Get over it'. We had a therapy session where the therapist was able to help him understand that cancer sx is not like his hip replacement. I'm thankful. He is trying now.

    Good idea to get help from friends🙏🏽

    Today I had a minor physical set back. Who knew sobbing hysterically for a day could work your core muscles 😬😂 so I'm back to resting and walking like an old lady.

    image



  • tanyarocks30
    tanyarocks30 Member Posts: 53
    edited October 2016

    hi everyone. just thought i would pop on and give a quick update for those who "know me". i started back to work aug 19 on a gradual increase of hours until i hit full time mid sept. feel good though first few weeks were tiring. i can nap to and from work as my bf and i work at the same place and he drives. WIN WIN!

    incisions from my debridement july 22 surgery are healing very well though my left breast is still mis-shapen due to the fat necrosis being removed. i have no idea when "2nd stage" will happen. is it possible to get more fat put into that breast to even it out? my right side looks like a boob of a 20 yr old. AWESOME!

    finally getting to go celebrate my 40th in vegas. we fly out oct 19 and i can't wait. once i get back from vegas i will call the surgeon for time frame.

    other than that, things are great. we moved and no longer live in the basement, we have a beautiful view from our new apt on the top floor (7) and since fall is my fav time of year..........it's awesome. here is a pic of our view:

    image


    hope everyone else is doing well. stay strong. once you are on the other side of surgery you will be amazed at how fast time flies and will look back on where your journey started and how far you have come!

    xo tanya

  • KAM5166
    KAM5166 Member Posts: 2
    edited October 2016

    Hi, All.

    I have been monitoring the invasiveness of breast CA in my family (sisters, cousins, mother, grandmothers, aunts) and was granted RRMastectomies, sentin biopsy and reconstruction by insurance with no difficulty. As a result, I am heading to NOLA in Nov for bilat DIEP w/sentinel node biop and reconstruction. Out of sorts with emotions. After working through all of the medical planning issues and potential outcomes/scenarios, my current concern is post-operative transitioning back to work and home life. I have requested FMLA-leave of 4 solid weeks with intermittent leave to follow. Should there be no complications, I am hoping to resume work week 5 post-op. Is this unrealistic with a fairly desk dependent position w/partial standing? I gather the fatigue-issue post-operatively from this thread. I would like to know if there is anyone in my similar situation who transitioned back to work without difficult? Anyone out there?

    Thanks, and I am so very appreciative for all of your posts. May God Bless you all!!


  • Lilyn
    Lilyn Member Posts: 156
    edited October 2016

    Tanya glad to get update was wondering how u have been. So glad healing up well. Have a fantastic time in Vegas:-)

  • Tiggerousity
    Tiggerousity Member Posts: 50
    edited October 2016

    Tanya, have an awesome birthday! The picture of fall is stunning! I miss living up north. I am interested in how your phase 2 works out. Fat necrosis sounds scary. How did you know it was that vs just tissue that needs to soften and heal?

    Today is one of those days where it is Impossible to frown:-)

    I'm doing better today. Noobs are softening with massage although there are a few hard areas on the inner edge. Somehow I pulled a muscle in my neck. It probably happens when I was in bed and trying not to twist my torso. Ouch! Who knew a little muscle could make moving so robot like.

    Anyone in Florida, Georgia and the Carolinas impacted by Hurricane Matthew? You have been on my heart💗✨

  • Dlia
    Dlia Member Posts: 135
    edited October 2016

    Morning all wound is open so wide now, they did order the wound vac and it should arrive tomorrow. The nurse has already called to let me know she will be here tomorrow or Wednesday depending on the time of day tomorrow the wound vac arrives. The pain in my stomach is getting better.

    Has anyone had to use the wound vac and is it painful?

    Thanks Simplicity for your offer to help but my neice is still here and now I won't need it packed since I'm getting the wound vac. The ps says it will take weeks to close so I guess I won't be going back to work in 2 weeks...

  • Simplicity
    Simplicity Member Posts: 723
    edited October 2016

    Evening ladies.

    Tiggerosity, I wish I had wise words but I don't. Hope everything gets better. This is difficult for us and all who care about us.

    Tanya, have a great birthday! Be careful, and have fun!

    Dlia, omg I hate to hear that :( Just know that it does eventually heal. Glad to hear your niece is still there and you have a health care nurse coming in! I am here if needed. My holes were small as far as they didnt go the length of the incision, but the first was super deep and had tunnels, I think all of them did actually. The second was longer but shallower. The other 2, one was shallow and small, the other was small but deep. I hated packing and kind of went into a zone when I did, and would just cry sometimes after. For a while, I had the dehiscence and the breast abscess. Maybe a month or a little over, I had I think 5-6 holes I was packing. It stinks. hugs.

    Maya, how are you feeling?

    I just got home from the hospital. The initial thought is cellulitis :( with a fluid cavity. The fluid cavity is superficial and they tried to aspirate it today before I came home with no success. Went in Saturday and have been on back to back IV antibiotics since. Vancomyacin and paracilln? or something like that. Long weekend. Ugh. The radiologist thinks the fluid pocket is old blood. He couldn't get much and tried twice. He only got maybe a cc out of it and they are sending that off to see if there is infection and where it is coming from if so? They told me I was going home this morning and last minute threw 'drain' at me. I cried immediately. I am so tired and was so shocked as the Dr didn't mention that when I saw him. That's where the aspiration came in because the fluid pocket was too shallow to hold a drain tube. luckily, because the radiology drain bulbs are a lot bigger than the OR ones. ugh

    I cannot wait until we are all out of this thread (nothing personal) and clear of all this!!

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited October 2016

    Dila, I haven't had reconstruction yet, but I do have experience with the wound vac, unfortunately. It's not painful and you won't feel any suction (yay! something not painful, finally!); it's just a pain in the butt. The dressing is connected to the machine by about 6ft of tubing. The machine itself is about the size of a medium purse and can go over your shoulder so you can move around easily with it. Your nurse or doctor will change the dressing every 2-3 days. You can't leave it on more than about 72hrs, due to risk of infection. I know the thought of having the wound vac for weeks is daunting, but you will be surprised at how fast the wound will fill in once you get the wound vac.

    I had my wound vac after suffering massive tissue necrosis after my BMX. It looked like a wolf had torn a big bite out of my chest all the way to the chest wall, about 4" wide and 2" deep. It was gruesome. At first they had me doing twice a day wet-to-dry dressings, poking gauze up in the tunnels. So much fun. NOT. But I was so upset after the first 4 days that my DH demanded that the PS do something else. So they put on the wound vac.

    That thing was a little miracle. The wound was dramatically better within 2 weeks. Sure, I had the wound vac on for 7 weeks, but without it that wound wouldn't have filled in for 6 months. After 7 weeks, they switched to another type of dressing (the name slips my mind now) that only had to be changed every 3 days. This one was much easier to manage than that twice a day wet-to-dry dressing. All told, it took a full 16 weeks for complete healing.

    I went back to work at week 3 of the wound vac. I was able to hide the tubing inside my pants and just wore the machine like a purse. I only had 2 people ask about it (some of the tubing had sneaked out.) I just told them it was a machine to speed healing and they didn't ask anymore questions.

    Best of luck to you. I hope your wounds heal much faster than mine, but even if they don't I wanted you to know that you can do this.

  • lemint
    lemint Member Posts: 76
    edited October 2016

    Good evening everyone. Hope everyone is well I having my diep flap reconstruction surgery in the morning. I was wondering if anyone knew how long the hospital stay is? Thanks

  • Mombytheriver
    Mombytheriver Member Posts: 6
    edited October 2016

    Hi Lemint,

    I am pretty new to these boards so I am not sure if the DIEP and free flap are the same but I had the BMX and free flap 13 days ago and was in for 4 nights /5 days (Philadelhpia area. It has been great to be home yet I should have rented a recliner as moving after the surgery has been tough. Lots of hugs and prayers coming your way. You will be great once you get to the other side of the day tomorrow.

  • Maya15
    Maya15 Member Posts: 112
    edited October 2016

    Lemint, I was in for 4 nights but my PS normally does 5. It will be at least 3. Best of luck for tomorrow!

    Tigs, it's a good sign your husband was willing to see a therapist with you, I hope things improve.

    Healing is going ok so far. Most important, I am not in any pain, and the PS says all the incisions look good. Last drain came out Friday and I was able to take my first shower. My PS has cleared me for sleeping on my side but physically it's inconceivable. I can't get in or out of bed even with pillows so I am sleeping in the recliner. Mobility is very limited. I can't stand up straight yet, and even a short walk around the apartment tires me out. But things are progressing slowly.

    Dlia and Simplicity, I am thinking of you. I live in fear of the abdominal incision reopening and I can't begin to imagine what it's like having to pack those wounds.

  • Katiebird
    Katiebird Member Posts: 35
    edited October 2016

    Lemint, I was asked to be part of a pain protocol study and was out of the hospital after 3 nights. I had unilateral mx with immediate diep reconstruction. Best wishes!

  • Tiggerousity
    Tiggerousity Member Posts: 50
    edited October 2016

    Thanks Maya, the session helped. He believe all the doctor's when they said they got the cancer however he didn't understand that my odds are increased and it isn't over. He seemed to think it was like his hip surgery and I should be all roses and smiles at 5-6 weeks.

    Yeah you are cleared to sleep on your side!! And you got he drains out! I can only sort of side sleep with tons of pillows. I hope you can find a comfortable position.

    And I just started walking almost upright my sixth week. Hang in there good times are coming

    Has any one else found 6 weeks to be a tough period? I am feeling much better but still under restrictions for exercise. I was job hunting before the diagnosis and had some good offers but now I am thankful I didn't take them. I am not up to fulltime work with energetic 20 ur olds.

    Lemint, my stay was 3 days. The doctor usually does 4 but has been transistioning to three. I was thankful to be home as the hospital staff were not well managed. It was a new transistoonal unit that fits between ICU and normal rooms. They have some kinks to work out.


  • natstar
    natstar Member Posts: 3
    edited October 2016

    Hi everyone,


    I'm having my BMX and immediate DIEP done in Oct 27th. I'm nervous but I really dont want to wait any longer. I'm just trying to get everything set up at home.

  • Simplicity
    Simplicity Member Posts: 723
    edited October 2016

    Natstar, you'll be okay. I set up a little nook area with a recliner, all my necessities right there, books, coloring books, whatever I may have needed. My I didn't have immediate DIEP/TRAM, but it was May 20th.I've had stage2, and feel I am just now moving forward. There are some of us here that aren't your typical....everything went great, but we have made it this far either way :)

    Hope everyone has a great day

  • natstar
    natstar Member Posts: 3
    edited October 2016

    Thanks Simplicity.


    I just got back from Walmart to pick up some jackets and button downs and some toiletries. My brother is moving a recliner in my place for me this weekend.

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