Looking for Reconstructive Surgery Advice: Tram Flap surgery failed

Crayonlover
Crayonlover Member Posts: 11
edited March 2014 in Breast Cancer #1
I'm new to this site. I'm looking for advice. In April, I had bilateral mastectomy surgery with immediate reconstruction using Tram Flap. Surgery was more complicated since my veins are small and my surgeon had trouble connecting the blood supply to the transplanted abdominal tissue. Ultimately, the flaps have been failing slowly over the last 4 months. Now, there is nothing left except open wounds that are still draining, scar tissue and flabby deflated skin. I've just finished chemo (Taxotere and Cytoxin) and next week I start a year's worth of Herceptin IV. My plastic surgeon is already discussing revision surgery which includes removal of what is left of the Tram Flap failure and placement of breast implants. Frankly, I'm scared of implants. Originally, I chose the Tram Flap procedure because it was supposed to be the lifelong solution with no maintenance. For four months, I have had to look in the mirror morning noon and night and see my "new breasts" melt away as I changed bandages. I don't know if I can deal with more surgery and months of tissue expanders and even more surgery. I don't know if I want to put my family through anything else. I'm tired and frustrated and don't know how I feel about any of it anymore. I would appreciate any feedback from any and all who have had reconstructive surgery or who have chosen prosthetics. No additional surgery can be done until six months from now...they have to wait that long after chemo ends so I am not rushing into anything.

Comments

  • pansylover
    pansylover Member Posts: 80
    Crayonlover~ how sad to go thru what you are. I chose to use a prosthetic. I didn't want anymore surgeries and I heard stories about reconstruction. I am very HAPPY with my choice It does not matter that I am a D flat(lol). I am healthy,breathing and enjoying life. Pray about it. You will be given an answer. I prayed alot. I am HAPPY with the results of my choice.
    Cindie
  • krkath
    krkath Member Posts: 72
    Welcome to this site Crayonlover, although I am so sorry to hear about your recon. going bad.
    I had my left breast removed after the first 2 surguries because my "margins" even after lumpectomy and node removal, were not enough to my Oncolgists satisfaction. (They really want to be sure to "get" all of the BEAST possible) BOY, did I cry! I was thinking, "NOT another surgery!"
    So, I didn't think I had the choice for expanders at that time since I was still healing from the last of 2 surguries. I also, decided to go with a Prosthesis and after a year and a couple months, I am so glad I did not go through any more surgery. If they can remove your scar tissue and even though it's more difficult for some of us than others, to see ourselves as whole again, I am very comfortable being a flat lefty and "B" righty.
    I have also heard horror stories about reconstuction and REALLY wish you the best... mostly to heal and recover from what's been done thus far. We have gone thru so much, that for me, dealing with a little foam boobie or my silcon boobie in the "special bra" is no big deal. I even wear my special bra (it's blue and looks like a bathing suit top) so that's what I wear when I go to the pool.
    I hope you have the support from those closest to you if the ultimate outcome is to let that area of your body heal and that that may be the most important, considering the risk of infection or something else.
    By the way, if I could mentally handle another surgery, I think I would go with a silcone or new type of implants that are supossed to be safe, just because it would be so much easier for the surgeon and NOT involve so many veins, muscles, tendons, etc. You have DONE SO MUCH already. Best Wishes and Much Happiness to you in whatever decision you come up with.
    ME; I loved going around BALD, but that's just me. So, you go girl.
    HUGS,
    Kathy
  • Sarah06
    Sarah06 Member Posts: 30
    I am sorry to hear you had such a difficult time. I wish you posted sooner. I started with expanders and was going to get implants. To make a long story short, I felt implants and my body didn't work, which ended up being true. I went to a wonderful doctor that uses your tissue without sacrificing muscle like the TRAM or Latitimus Doris, gluteral reconstruction surgeries. The operations are SGAP, which uses tissue from your butt (no muscle loss) and DIEP, tissue from your stomach (no muscle loss). The DIEP is more advanced than the TRAM because it doesn't sacrifice your body's muscle. Only a small amount of doctors can perform this microsurgery. My main doctor was Dr. Joshua Levine in New York city, and he performed the first part of my surgery with Dr. Allen. If you are close to New York, maybe you could see Dr. Levine for a consult, and maybe he can help you. I don't know, but it may be worth a try.
    Again, I am so sorry, but maybe the doctor can do something with your tissue. My prayers are with you. I hope I helped you in some small way.
    Sarah06
  • maryhare
    maryhare Member Posts: 2
    I'm so sorry. I had tram flap surgery for bi-lateral mastectomies in january. I was so thrilled to have breast! immediately the tissue began to fail. Over a 2 month period I had 3 surgeries to remove dead tissue. In june I had an implant on the left side. I'm so pleased with the results. I truly dont know what I was so afraid of and wish I had gone this route in the first place. After my right side settles down I will have an implant on that side too. I chose saline implants because they can be adjusted to size about 20% when all the tissue is healed. So many times I wanted to just forget it. I'm so thankful I didnt. I love the implant and I dont worry about it. If feels like my own tissue. What ever you decide to do, It has to be better than where you are now. The debridement was the worst part. Things will get better, just take your time. Love and Prayers, Mary
  • Crayonlover
    Crayonlover Member Posts: 11

    Crayonlover~ how sad to go thru what you are. I chose to use a prosthetic. I didn't want anymore surgeries and I heard stories about reconstruction. I am very HAPPY with my choice It does not matter that I am a D flat(lol). I am healthy,breathing and enjoying life. Pray about it. You will be given an answer. I prayed alot. I am HAPPY with the results of my choice.
    Cindie

    Cindie~Thank you for sharing your thoughts with me. By the way, D flat has a nice sound..I think I hear it every day during my daughter's clarinet practice :-D

    Crayonlover
  • Crayonlover
    Crayonlover Member Posts: 11
    krkath said:

    Welcome to this site Crayonlover, although I am so sorry to hear about your recon. going bad.
    I had my left breast removed after the first 2 surguries because my "margins" even after lumpectomy and node removal, were not enough to my Oncolgists satisfaction. (They really want to be sure to "get" all of the BEAST possible) BOY, did I cry! I was thinking, "NOT another surgery!"
    So, I didn't think I had the choice for expanders at that time since I was still healing from the last of 2 surguries. I also, decided to go with a Prosthesis and after a year and a couple months, I am so glad I did not go through any more surgery. If they can remove your scar tissue and even though it's more difficult for some of us than others, to see ourselves as whole again, I am very comfortable being a flat lefty and "B" righty.
    I have also heard horror stories about reconstuction and REALLY wish you the best... mostly to heal and recover from what's been done thus far. We have gone thru so much, that for me, dealing with a little foam boobie or my silcon boobie in the "special bra" is no big deal. I even wear my special bra (it's blue and looks like a bathing suit top) so that's what I wear when I go to the pool.
    I hope you have the support from those closest to you if the ultimate outcome is to let that area of your body heal and that that may be the most important, considering the risk of infection or something else.
    By the way, if I could mentally handle another surgery, I think I would go with a silcone or new type of implants that are supossed to be safe, just because it would be so much easier for the surgeon and NOT involve so many veins, muscles, tendons, etc. You have DONE SO MUCH already. Best Wishes and Much Happiness to you in whatever decision you come up with.
    ME; I loved going around BALD, but that's just me. So, you go girl.
    HUGS,
    Kathy

    Kathy~My thanks to you too for sharing your thoughts. You know, only 3% of TRAM procedures fail..wouldn't you know I would be in the 3%?! I have a great support team. You know the old saying "If you have a hammer, every problem can be solved with a nail"? My husband believes that for a plastic surgeon, every problem can be solved with more extensive surgery and he says he's happy I'm alive and the rest doesn't matter.

    And about being bald...I cover my head when my 10 year old daughter is around because it makes her upset to see me bald. I have bandanas/scarfs and two wigs, one sporty and one dressy. I have to say that the wigs make me itch...I think I might have fleas (lol).

    Crayonlover
  • Crayonlover
    Crayonlover Member Posts: 11
    Sarah06 said:

    I am sorry to hear you had such a difficult time. I wish you posted sooner. I started with expanders and was going to get implants. To make a long story short, I felt implants and my body didn't work, which ended up being true. I went to a wonderful doctor that uses your tissue without sacrificing muscle like the TRAM or Latitimus Doris, gluteral reconstruction surgeries. The operations are SGAP, which uses tissue from your butt (no muscle loss) and DIEP, tissue from your stomach (no muscle loss). The DIEP is more advanced than the TRAM because it doesn't sacrifice your body's muscle. Only a small amount of doctors can perform this microsurgery. My main doctor was Dr. Joshua Levine in New York city, and he performed the first part of my surgery with Dr. Allen. If you are close to New York, maybe you could see Dr. Levine for a consult, and maybe he can help you. I don't know, but it may be worth a try.
    Again, I am so sorry, but maybe the doctor can do something with your tissue. My prayers are with you. I hope I helped you in some small way.
    Sarah06

    Sarah06~Thanks for the tip about your doctor. It really helps when you have so much faith in your doctor. I like my doctor, as well, but I have had people suggesting that I get a second opinion before doing anything else. My doctors are all at the Rena Rowan Breast Cancer Center at Univ of Penn. There is a doctor associated with another university in Phila that I have considered for a second opinion.

    As for my surgery, it started as a TRAM but the doctor decided he didn't need to take any ab muscle (DIEP) so I did get a nice tummy tuck without muscle damage.

    Thanks for sharing.
    Crayonlover
  • Crayonlover
    Crayonlover Member Posts: 11
    maryhare said:

    I'm so sorry. I had tram flap surgery for bi-lateral mastectomies in january. I was so thrilled to have breast! immediately the tissue began to fail. Over a 2 month period I had 3 surgeries to remove dead tissue. In june I had an implant on the left side. I'm so pleased with the results. I truly dont know what I was so afraid of and wish I had gone this route in the first place. After my right side settles down I will have an implant on that side too. I chose saline implants because they can be adjusted to size about 20% when all the tissue is healed. So many times I wanted to just forget it. I'm so thankful I didnt. I love the implant and I dont worry about it. If feels like my own tissue. What ever you decide to do, It has to be better than where you are now. The debridement was the worst part. Things will get better, just take your time. Love and Prayers, Mary

    Mary~ Thank you for your prayers and advice. It really is a horrible feeling to have gone through this surgery only to find everything melting way before your eyes. And chemo has delayed the heaing process which increases the risk of infection in the open wounds. I can't wait for the day when I don't have to deal with bandages anymore. And you're right, whatever I decide to do will be better than what I've got now. When you hear stories about implant failures, do you get concerned? Maybe I'm just paranoid about the possibility of experiencing additional complications.

    Crayonlover
  • 24242
    24242 Member Posts: 1,398
    krkath said:

    Welcome to this site Crayonlover, although I am so sorry to hear about your recon. going bad.
    I had my left breast removed after the first 2 surguries because my "margins" even after lumpectomy and node removal, were not enough to my Oncolgists satisfaction. (They really want to be sure to "get" all of the BEAST possible) BOY, did I cry! I was thinking, "NOT another surgery!"
    So, I didn't think I had the choice for expanders at that time since I was still healing from the last of 2 surguries. I also, decided to go with a Prosthesis and after a year and a couple months, I am so glad I did not go through any more surgery. If they can remove your scar tissue and even though it's more difficult for some of us than others, to see ourselves as whole again, I am very comfortable being a flat lefty and "B" righty.
    I have also heard horror stories about reconstuction and REALLY wish you the best... mostly to heal and recover from what's been done thus far. We have gone thru so much, that for me, dealing with a little foam boobie or my silcon boobie in the "special bra" is no big deal. I even wear my special bra (it's blue and looks like a bathing suit top) so that's what I wear when I go to the pool.
    I hope you have the support from those closest to you if the ultimate outcome is to let that area of your body heal and that that may be the most important, considering the risk of infection or something else.
    By the way, if I could mentally handle another surgery, I think I would go with a silcone or new type of implants that are supossed to be safe, just because it would be so much easier for the surgeon and NOT involve so many veins, muscles, tendons, etc. You have DONE SO MUCH already. Best Wishes and Much Happiness to you in whatever decision you come up with.
    ME; I loved going around BALD, but that's just me. So, you go girl.
    HUGS,
    Kathy

    At 36 when diagnosed I struggled terribly with the mastectomy thing more than anything. Like pulling teeth, very painful for me and thought I just wanted them both gone to better my chances of survival.
    My mother a nurse and a surgeon who's practice was more than 90% breast cancer advised me to do one at a time. Worry about the cancer first then have another mastectomy if that is what I need for myself. Something that they both stressed to me which I am not hearing allot anywhere else is that this is TRAUMA to the body.
    As it turned out I was very sensative to everything they did to me including surgery. I was most fearful I wouldn't return for the second one because of the pain. But I did a year later I had second one removed after more lumps but these were all benign.
    I had a surgeon who seemed to think that having a mastectomy didn't hurt but I am here to say otherwise, for some of us it is horrid and that alone is trying to tell us something.
    I have since learned that being a flatliner is ok too and I don't bother with the fake breasts. I truly have learned to accept things as they are and am so grateful the emotional connection wasn't that great. I have also since found that men look me more in the eyes than they ever have, not that I had big bazoombas or anything.
    We truly have to do what is going to make us comfortable in the end. Sometimes time will make this clearer than ever to us. I too am sorry that you have had so much to face on top of your cancer. One would of thought that would of been enough.
    My thoughts are with you,
    Tara
  • siu1988ldh
    siu1988ldh Member Posts: 3
    Hi Crayonlover,
    In June I had a bi-lateral with expanders placed at time of surgery. Before I had the surgery I looked at my doctors pictures and really liked the look of the implants. Plus my doctor does not like to do the tram flap on a bilateral due to the removal of a lot of abdominal tissue.
    Expanders have not been as bad as I thought just a bit painful at first but you really are quite numb so that helps. In December I am getting Silicone impants. A few girl friends have them (also BC survivors) and love them. They really feel natural and they have not had any problems.
    I guess you need to ask your self if going through this surgery will make you happy. If it really doesn't matter don't do it. Your family will go along with anything that will make you happy so no worries about them. Since you have six months to think about it see how things go and do what makes you happy and fullfilled. Hope this helps.
  • cabbott
    cabbott Member Posts: 1,039 Member
    Crayonlover,
    It's rough enough to have cancer without all the grief that you have been through. My heart goes out to you. I too have been diagnosed with breast cancer. October 1st I will be five years out from my last breast surgery: a right mastectomy without reconstruction. Before the operation I looked at all the choices open to me. Lumpectomy had already happened along with an excisional biopsy. Because the cancer, though small, was in two places and I'm small, I had to have a mastectomy. I was at a university hospital that offered state of the art DIEP Flap reconstruction along with everything else. Now they even have a SIEP flap that is supposed to be one better than that. But those surgeries can fail (as happened to you) and they stretch out the recovery period. I was concerned that implants might mean further surgery down the road as they can sometimes need replacing after 5 to ten years. My surgeon and my nurse urged me to have reconstruction and my insurance and boss were supportive. But after seeing how life-like the silicone prosthesis felt (my nurse at the time had two prostheses after bc and actually encouraged me to feel them!), I knew that's what I wanted. I wanted to be back on my feet enjoying whatever time I had left as soon as possible. I didn't care about a scar. As far as I'm concerned, that's my battle scar and what soldier is ashamed of a battle scar! My husband said he really didn't care, he just wanted me to do what I wanted. I was worried earlier that the prosthesis would be uncomfortable and hard. Touching one let me know that no child hugging me would ever tell something was wrong. I am a 34 b. Heavier people tell me that a large prosthesis can be heavy and hot, esp. in the summertime. I have never had a bit of a problem. I lost weight on purpose after the mastectomy. I was glad then that I didn't have an implant, because it was easy to go buy a smaller prothesis when one side "shrunk"! When I had the larger prothesis, I had a hollow one for swimming and a solid one for everyday. Now one does both, but again, that's because I'm small. I don't have to worry about further surgery because of what I believe are called contractures (when the tissue around the implant get hard and sometimes move the implant out of place). I didn't have as much pain or as long a recovery from the mastectomy. In fact, I missed less than two weeks of work and was able to lift the laundry basket by the end of the month (though I preferred to have my husband do that!!!) I disappointed my surgeon and my nurse I suppose, but I got the choice I wanted and I'm happy with it. I told my nurse to have the surgery done to her if she wanted it. Later I found she had found a way and did exactly that! And good for her! I believe firmly that everyone should be able to choose what makes them happy. I know people in your shoes that found a talented surgeon that was able to offer them implants or even another DIEP flap operation using a different donor site after a failure. And I know women that said "Enough is enough!" and decided to have the surgeon clean things up so they had a nice flat chest with a smooth flat scar. Some had a tatoo placed over their scar so it looked great to them. Depending on your health and the talent of the surgeon it might be possible to do reconstruction, but you have to decide what it is that you are willing to go through to get what you want. The Susan Love website had pictures of women who posed (topless of course) with all the choices and their stories of why they did what they did and how it turned out. That site helped me make up my mind on my choice. An older book in the public library titled "A Women's Choice" (no DIEP flaps were reviewed) also gave pictures and stories from women that had to decide what they wanted to do. We are all different and no one choice is right for everyone. None of the choices are bad ones. All the choices have benefits and risks. Good luck finding your way through all the choices!