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DIEP Flap Reconstruction 2016

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Comments

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

    Bluebird, welcome to the other side! And glad to hear that you were able to shed some drains. They are the worst part of this.

    Sorry about the sleeping problems. I used a wedge, but I know a lot of ladies just made a nest out of pillows. They layered 3-4 standard pillows to make a wedge for their back, another under their knees, and othersunder each arm. Others just slept in a recliner.

    I slept elevated for a good 3 weeks because it takes time for the tummy to stretch out.

    The swelling you are experiencing is just swelling. It will all settle down Omer a few days/weeks. Dog ears is a bulge of fat above the edges of the ands of the tummy incision--kind of looks like a muffin top.

    Whatever is going on, they can fix it in stage 2. Stage 1 is to get things moved with a good blood supply. Stage 2 is about making it all pretty. I will say that if stage 1 was all, I would be happy! But it will be nice to have the finishing touches.

    TeeJax, it will take quite awhile for you to be "back to normal." This surgery is a bit of a marathon, but once you are done, you are done--no more exchanges, rippling, fear of contracture, etc.

    Don't over do it. Expect a little setback in pain and energy at 3 weeks. Encourage your children to serve you--it will improve their character houses immensely. They can do more around the house than you would think! It takes about 6 weeks before you are back up to snuff, yet your tummy will still complain for awhile after that.

    Hang in there!

  • StaceySue2U
    StaceySue2U Member Posts: 83
    edited March 2016

    BigSister-2015 , thanks! It's so hard to sit still and I am very type A, as well. What are you doing with your time while you sit? I'm staying in my RV in my dad's back yard during all of this. My dad brought me a mandolin and told me to learn to play it. Me being me, I've played until I have blisters :) Dad's pleased as punch because they need a mandolin in the band he's in and I'll at least be able to strum some cords. He says "That's it! That's the reason you got breast cancer. You were destined to be a mandolin player!" Silly guy.

    I've been doing a lot of painting, as well.

    Today I'm going to have a seroma drain put in. Tuesday I'm having the drain removed from my left side even though it's still putting out 35-40cc per day, since it's been a month and they don't like to leave them in longer than that.

    I got my DIEP date! May 11! The doctor said I don't have enough fat to go very big. I'll be lucky to get B cups. I've been so embarrassed about my lower abdominal fat for so many years and it was strange to hear him say there's "not enough". 5'4", 180 lbs but I guess it must mostly be muscle LOL

  • HRwinter16
    HRwinter16 Member Posts: 16
    edited March 2016

    oh yes - the travel pillow was the number one thing that helped me get through recovery too!!

    I'm also very happy with my DIEP flap - it IS a very long surgery, and the immediate recovery was tougher than I expected, but I was and am, happy with the decision.

    Sending all good thoughts and support

    Xo

  • sportysister
    sportysister Member Posts: 47
    edited March 2016

    FINALLY got my last drain pulled today! Yippee!!! 5 weeks, thank God it's out! Hope all you ladies are healing well and have a Happy Easter and enjoy Purim!

  • StaceySue2U
    StaceySue2U Member Posts: 83
    edited March 2016

    Congratulations on getting your drain out, Sporty!! Nice Easter present :)


  • tanyarocks30
    tanyarocks30 Member Posts: 53
    edited March 2016

    Anyone have the middle of their abdominal incision get a "hole" while healing. I have one spot that just won't close like the rest. I plan on calling the hot line in the morning.

  • Scarlett152
    Scarlett152 Member Posts: 43
    edited March 2016

    Tanya, I have one too with my stage 2 reconstruction. Didn't have it with the original DIEp. Also have what inwouldncall a crater where I had lipo filling in right breast. Not happy!

  • ducky179
    ducky179 Member Posts: 23
    edited March 2016

    Tanyarocks, I've had a couple of holes in my abdominal incision. This may not at all be similar to what you are experiencing, but I don't see it mentioned much on this forum so I'll go into some detail... I'm almost 8 weeks out and I'm still having to pack saline-soaked gauze in two holes in my incision to help them heal. Everything seemed fine for the first couple of weeks, but I remember some oozing from one spot. The plastic surgeon actually could tell it wasn't healing well and sort of opened it back up (just in that spot) at a follow up appointment to help it heal better. It was initially big enough for at least a 4x4 piece of gauze to fit in there, but now it's half of a 2x2. The other spot is a small opening in the skin, with some tracking under the skin that has to be packed as well. That is getting smaller as well.

    On the other hand, just last week I had a random new hole (very small) just suddenly start to bleed. That one is fine now and never got any worse. Seemed more like a superficial irritation.

    This was a risk that was explained to me as a possibility due to my higher BMI. Basically the fat that was left on my abdomen didn't heal back together as well as other types of tissue. Wound dehiscence is the term.

    To reassure you and anyone else, none of this is painful. The plastic surgery office supplies me with the saline, gauze, and most other supplies. I did end up on a course of antibiotics, but I don't think it was because one of these spots got infected. They were worried about increased drainage and think I had a fluid collection that they were worried could get infected.

  • tanyarocks30
    tanyarocks30 Member Posts: 53
    edited March 2016

    my hole isn't very big and I wouldn't be able to fit gauze in there etc but we will see what nurse says when I call today. Ty for the replies.

  • sportysister
    sportysister Member Posts: 47
    edited March 2016

    Thanks StaceySue2U! It is SUCH a relief! Happy Easter all!!!! 🐰

  • Ridley
    Ridley Member Posts: 95
    edited March 2016

    Tanya and ducky - was just surfing and read about your incision holes. I had one as well. Caused by removing a couple of stitches that did not dissolve. I had to keep it clean and covered and used some type of antibiotic ointment that home care provided. It closed in about 12 weeks or so from my original surgery date. It was sort of neat watching it close;)


  • Scarlett152
    Scarlett152 Member Posts: 43
    edited March 2016

    I've wondered if chemo has anything to do with these holes opening up since I didn't have them in the stage 1 DIEP surgery, but have 3 spots after the stage 2 fat grafting which was after chemo. I also had my DIEP stomach incision lowered in the Stage 2 surgery (long story- original PS made a mess of it) and that is where one of the holes is. Not sure I want 8 weeks of packing them with gauze and the constant oozing

  • OrlandoSurgeons
    OrlandoSurgeons Member Posts: 1
    edited March 2016

    I had a DIEP in December in Orlando. My surgeons were terrific. Here are somethings to consider. Your hospital room may be kept very warms. The temperature in mine was 80 degrees. It keep it cooler I asked the nurses to keep the lights turned off in my room. When I returned home I used my mother-in-law raised toilet stool as a place next to my bed for a tray. The stool had handles which I could grab to roll out of bed. For a walker, I used one with higher handles. The most painful part of recovery for me was a back ache from walking hunched over for a while. To help your poofy tummy, my surgeon's ARNP recommend bicycle pants which worked great. Just make sure it pulls over your new belly button.

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2016

    Hi all - I am just home from 3/24 DIEP surgery. Orlando - my PS did the same - room was kept at 90 degrees for 3 days. It was excruciating (especially in conjunction with the AI). They actually had a heater in the room set at "high". This caused the air in the room to dry out as well, so my airways totally dried up. I had forgotten about the rib thing - they break a small piece to get access to the vein. That is causing me a little pain when I breathe in deeply. A big surprise for me was the compressor pads on top of the stockings - hot, hotter hottest. My back is also very sore from the 'hunched walk'. Breast pain has not been a big issue - totally okay with the tylenol. I am pleasantly surprised with my drain situation. I have 3, and 2 of them are already <10 ml per day. The left ab drain is the most prolific, but already down to about 40 ml. I have blisters, some broken, some not - is that from the tape?

    The big disappointment was that my PS could not do the planned reduction on the left breast in the same surgery. I was on the table for 10.5 hours, as her first attempt at the vein failed. She told me that she had been at the point of calling it and putting in TEs. I had really hoped for the reduction because I wanted to get a pathology on it. I had so hoped to get some assurance that the left side was cancer free. Oh well - about par for the course with my luck on this one.

    My DH suggested using hiking poles when I walk - and I'm going to try that.

    Best wishes to all - so happy to be out on the other side. :) Keep on healing ladies!!

  • HRwinter16
    HRwinter16 Member Posts: 16
    edited March 2016

    they didn't keep my room hot, but they had something called a "bear hugger" which looked like a comforter made of clear plastic wrap. It's filled with hot air, continually blowing in heated air. And they drape it over the chest area to stay warm. I stayed like that I hospital for three days to keep the newly transferred tissue warm!


  • ducky179
    ducky179 Member Posts: 23
    edited March 2016

    They kept my room warm, but it wasn't too stifling. I remember mostly getting too hot at night. They also regularly brought me heated blankets to put over my chest.

  • tanyarocks30
    tanyarocks30 Member Posts: 53
    edited March 2016

    I just had a towel on my chest. They never kept the room hot as there were other non breast patients in the immediate post surgery room (4). I was so hot I had a fan blowing on me all the time.

    I am off to see the PA Thursday for them to check my incisions. Abdominal in the middle and both incisions under the breast may have small splits in them. Lots of "slough". Hoping everything is OK.

    STELLA.....welcome home. Sorry to hear about reduction but one step down! Cheers to being on the other side. It's a long road but we made it. Remember........relax and do pretty much nothing for bit.

  • junesummer
    junesummer Member Posts: 13
    edited March 2016

    Hello Everyone,

    First I want to say God bless you all. I feel for every one of you.

    I am scheduled for DIEP surgery April 25th. I am getting cold feet. I had a mastectomy on my right side in Aug 2012, I lost the nipple, had reconstruction and then had radiation in early 2013 after the surgeries. . I was happy with the outcome for a while but what was once nice and round has now become misshaped and tight and the implant seems pushed up from scar tissue on the radiated skin. Very uncomfortable .. My PS said he can take the muscle and skin from my back to replace the scar tissue. I am very nervous about surgery on radiated skin two years after the fact. I hear stories of skin not healing and have been told I am at risk of not healing well. I have scoliosis and have bars in my back and my neck is wired. I am afraid of more problems with my back. I have pain and discomfort on a daily basis now. When I go to bed at night I think of how I will be able to lay comfortably after surgery and how long recovery will take. I don't remember how long it took to get drains out and start feeling better after the mastectomy . I hear some of you talk about 5 weeks or more with drains. I do remember the drains being very painful .. My PS said I will most likely have two in the back and one in front after the surgery this time. I don't know what to do. Dose the shrinking and scar tissue continue to worsen? I don't know if I should leave well enough alone or go ahead and pray that I have a good outcome.

    Any advice welcome

    June

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

    June, is he doing a DIEP or a latissimus dorsi flap? With a DIEP, the drains are in the breast and tummy.

    5 weeks with drains is unusual. Under 2 weeks is more common. Mine were out a few days after I was home.


  • junesummer
    junesummer Member Posts: 13
    edited March 2016

    Hello Big Sister-2

    Yes I was wrong, Latissimus dorsi flap. I didn't think the drains were in that long. Just reading other peoples comments. Seen several weeks on some. My biggest worry is how long it will take to recover and will my radiated skin heal. Very nervous about it. Starting to think I want to put it off or back out.

  • 4happygirl
    4happygirl Member Posts: 9
    edited March 2016

    Has anyone had a delayed DIEP using abdominal skin? I had one 2/25 and I'm freaking out about how it looks. I'm envious when I see complaints about hard, uncomfortable TEs. Just be glad you were able to expand! I had a TE implanted at the time of my Mx but had a wound healing problem in one spot. After it was debrided and began healing, an infection had colonized on the TE in the same spot, and it had to come out. My PS later implanted another TE, but the skin wouldn't expand. I decided not to do an immediate DIEP at the time of my Mx because I was afraid that I would have huge incisions plus need chemo, then be sick and healing poorly, with the result that I wouldn't be able to take care of my daughter for an extended period (she was 6 at the time). Further, my whole BC team discouraged the idea because they were afraid I would need rads and that the flap might be lost. (I had 3 tumors in one breast, with at least 2 primaries, all Stage 1.) I talked to all my docs, and many nurses, and they all told me that they have had patients who lost their tissue flaps after rads. They used words like "disaster" and "catastrophe" to explain why they didn't recommend taking the chance. In the end, I didn't have radiation or chemo, luckily. But I have ended up with a poor cosmetic outcome for a reconstructed breast anyway. My PS does excellent work by all accounts; this isn't due to any failure on his part. I think he did the best with what he had to work with, which was a more than adequate size tissue flap and virtually no remaining breast skin. To his credit, the shape of the breast mound is good, and even without a revision, it's pretty close to my natural breast. I'm looking natural in my clothes, and with a flatter tummy. But the scars are extensive, all the way around the perimeter of the breast mound, with a little "dart" on the outer side. On the inner side of the breast, the scar circle crosses over the inner end of the Mx scar, making kind of an "X" on the cleavage side of the mound. Lastly, the skin on the flap looks different in tone from the surrounding chest skin, creating a "patch" look. The abdominal/breast mound skin looks much lighter than it did on my abdomen as well, so I'm hoping that it will become a more normal tone, maybe as blood vessels repopulate the tissue. I tried to prepare myself for the result by looking at lots of photos, and I thought I was done crying, but the reality of my new Bride of Frankenstein look, including the giant abdominal incision, is super distressing.

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2016

    yaay - 6 days post op and 2 of 3 drains removed! Pain is minimal. Can sleep in my bed, and could lie flat on my back with legs straight today. Incisions are all dry. Healing much quicker than I ever expected. Will see the BS on April 14 to find out the story on rads, but at this point so,so grateful to be feeling as normal as I do. A sincere thank-you to all the wonderful warrior sisters on these boards for their unfailing support and sharing of information.

  • craftysandy
    craftysandy Member Posts: 12
    edited March 2016

    That's great to hear Stella! I have to be at Penn tomorrow at 5:30 am for my BMX and DIEP. Wish me luck!

  • junesummer
    junesummer Member Posts: 13
    edited March 2016

    Good Luck along with prayers for you. Was any of the reconstruction on radiated skin?


  • stellamaris
    stellamaris Member Posts: 313
    edited March 2016

    Craftysandy - Sending my best wishes and will be in your pocket. Hang in there!

    Junesummer - no, the recon was not on radiated skin. It was a umx with immediate recon. There is a chance I will have to have rads on the DIEP though, which I hope won't affect it too much

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

    June, it is unlikely that you will have drains longer than a week or two, but no guarantees.

    As to healing from the lat flap, no one on this forum had that, so we can't really say. There is a lat flap forum that you can ask on.

    https://community.breastcancer.org/forum/44/topics/751135?page=180#idx_5381

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

    4happygirl, so sorry to hear that you are not happy with your outcome. But do remember that it takes a full year for scars to mature.

    I was wondering what I had done to myself when I looked at my huge belly scar too, but now that I am three months out, it is MUCH nicer looking. And my bellybutton is almost looking cute!

    I too had a delayed DIEP with a large flap on one side because they could not expand that because of infections. The other was expanded and is a little smaller. My picture is in page 10 of the is forum if you want to see.

    The skin tones aren't too different, but the texture is, but I am getting used to it. It is getting better looking with time. I look pretty great in clothes, which helps. I hope that gives you some encouragement? Give it some time.

    I am looking forward to nipples next week!

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited April 2016

    junesummer: I had a DIEP, and I did have right breast radiation prior. I did have issues with healing. I lost some skin, and I had to have skin grafting 3 months later. It was not bad in terms of pain, but I do have a large scar, which I can live with due to its location. Lisa


  • 4happygirl
    4happygirl Member Posts: 9
    edited April 2016

    Thanks for the encouragement Big Sis. My PS told me all along the way that everyone has to use some abdominal skin for DIEP reconstruction, it just varies how much and where. Maybe my reaction is what we all experience at first. The transition from having a 6 inch Mx scar to being crisscrossed by scars takes some getting used to, but you are right, the scars will fade. Also, thank-you for posting your pics. This has helped me get what my PS has been telling me all along better than anything else.

    Another issue, and I'm sure I'm not alone in doing this, is that it's not constructive to compare results to an immediate reconstruction, especially with a prophylactic nipple-sparing BMx, which look like natural breasts. Even though no one else thinks it's a good idea, I've spent some time thinking about my decision process, and revisiting my PS's recommendations with him. Second guessing yourself is never comfortable if you think you made a mistake. But it can be helpful to recall why you made the choices you did in the situation you were in at the time. In my case, I followed my surgeon's advice and made a conservative choice because I thought it was best for my family, then had unforeseeable complications that altered the result I expected. With the benefit of 20/20 hindsight I would make a different choice, but I made the right call at the time with the information I had.

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

    4happygirl, I hear you! When the DIEP is immediate, they make a keyhole incision such that the flap ends up being the new areola and all the scars get hidden in the tattooing. A delayed DIEP, even with tissue expanders, results in much larger flaps.

    I was having a little pity-party earlier today. "If only" I had gotten a second opinion from another PS at the time of my original surgery, I could have had the DIEP right off the bat and not only have gotten a better cosmetic outcome, but would have avoided sepsis as well, not to mention avoiding the loss of an entire year due to TE complications.

    Like you I made the best decision I could at the time, and it wasn't a particularly bad one. Not being able to see the future makes it hard, and the terror produced by those words "you have breast cancer" don't help.

    When thoughts go to second-guessing myself, I pulll back and remind myself that nothing happens to me outside of the hand of God. He ordained the events of my life before the dawn of time, and I know He is utterly good, so I can rest in that.

    It is rather miraculous that they can reconstruct a breast at all, and my current PS says creating nipples is hard to do as well, so I'll just choose to be content with what I get and let Vinnie the tattoo artist make them as pretty as possible, but that is another six months away. It never seems to end!