BRCA1 positive-TRAM Reconstruction

dresch
dresch Member Posts: 4
edited March 2014 in Breast Cancer #1
I tested positive for the gene mutation which increases risk for breat/ovarian cancer. I have been diagnosed with breast cancer, have had the lumpectomy. Also had my ovaries taken out (as preventive measure). I am getting ready to start chemo. I have a couple months to decide if I want a double mastectomy and recon. i am interested in hearing from anyone that has had the TRAM reconstruction...ie how did it go? Any side effects? Etc. Thansk

Comments

  • BBK
    BBK Member Posts: 53
    I had a mastectomy with immediate TRAM flap reconstruction back in January of this year. I was Stage 1, invasive ductal carcinoma, with 0 node involvement. They did a skin-sparing mastectomy (left) and took the TRAM flap from the right side (although my scar runs hip to hip). I had three Jackson Pratt drains in for about 3 weeks following the surgery. Then, the breast wound was VERY slow to heal, and in fact, I had to have some necrosis removed, which opened the wound more. I was applying a wet-to-dry dressing to the wound twice a day. It took 3 months for it to grow new skin and completely close over. Looking back on it now, that wasn't so bad. But, at the time, it felt like it was taking forever, and I wondered if it was worth it. Now, it seems worth it. I have NOT had the nipple/areola part done, and I'm not sure I want to go through with all that. Following all that, I had 4 rounds of AC Chemotherapy. I finished with that in May. Now, I'm on Tamoxifen for 5 years, as my cancer was estrogen positive. The chemo, though, started the menopausal symptoms, so I'm having hot flashes every 20 minutes or so all day and night. The tamoxifen is also causing severe joint pain, for which I'm currently taking ibuprofen for pain relief. I am to call the oncologist this week, as the ibuprofen is doing nothing to relieve the pain, so may step it up to something else. The cancer didn't hurt...the treatments have hurt!

    As to the TRAM...I probably would do it again, if I were making the decision now. I knew that I didn't want implants, with the need to replace them every 10 years or so (I'm only 44). I didn't want anything artificial... I am still having pain issues from my surgery -- especially at the site of the TRAM removal, and the drain that was closest to the removal. I still have no feeling whatsoever in the center of my chest where they tunneled under the skin to move the tram flap up to make my new breast. And, of course, the new breast has no sensation in it at all. I have a ridge of hard scar tissue at the outer edge of the new breast (kinda under my arm), which is sometimes annoying. Other than that, the new tissue has softened up nicely, and feels very natural. It looks good under my clothing, and I'm fairly even on both sides. I have full range of motion in my left arm. All in all, I think it was a success. For the most part, I'm happy with everything, even though it's been a grueling year. I could drive after 4 weeks, but recovery is slow. Sleeping on my back for about 6 weeks was hard, and I was using quite a pile of pillows under head and knees. Sleeping on my side again took about 8 weeks or so. I'm still being careful about what I lift, limiting myself to no more than about 20 pounds.

    Hope this helps. Feel free to email if you have other questions! Good luck to you! Barb
  • cruf
    cruf Member Posts: 908
    Hi! I had a single Tram Flap 3 years ago Sept. 11. I'd be willing to answer any questions you might have. You can e-mail me here or at [email protected]. Take care. HUGS!! Cathy
  • cammie
    cammie Member Posts: 102
    I had my Latisamis Dorsel brought forward from my back. I am a very small woman so there was not enough there to make a breast, so I also got a expander and just got my implant on Thursday. I didn't want my stomach cut up also. By doing the latismis dorsel it was contained to just my left side. Would I do it again??? Good question. I guess not, I probley would just do implant. I wish I had a double mastecomy instead of just a single. I am soo paranoid that it will return to the right breast. Everyone is different on how they feel. One thing is for sure, once you get reconstruction you start to feel more secure with yourself. I know I have, and thats without the nipple. I will be getting one and can't wait. Its a long process, but think of it as a sculpture. You want one that your kid threw together at school one day. Or do you want one that Michael Angelo took a year to make. (((Hugs))) Cammie
  • jake10
    jake10 Member Posts: 202
    Read my post "Lossing faith in my Physician". I had one of those nighmare cases. The tram is a BIG procedure. I had mine done immed following the mastectomy and I was slow to recover my strength. I needed help to dress and bathe and prepare meals for me. I am not a dependent person and I was shocked at how much help I needed.
    On the positive side, a friend of mine had done after radiation and did wonderful. She was completely done nipple and all within 4 months. So a lot depends on your phisical condition and it seems, Luck! Beth
  • joules112
    joules112 Member Posts: 23
    I had a tram flap done 14 years ago - back when it was really really new! I'm very happy with my results. I have not yet (lol) had my nipple put on. Though I still am trying to decide if it's worth it. I look good in my clothes and it fills my bra perfectly. It is a difficult recovery but I felt it was worth it not to have something not me inside. It changes temp. just like the rest of my body. Bounces just like a real breast. There is a bit of a different sensation in the reconstructed breast. I have feeling but it's kind of like when your leg falls asleep .... you can feel yourself touching it, but it's just different. Not bad - just different. If you have any questions at all - I would be happy to answer them for you if you'd like. my email is [email protected] It's a very personal choice and it's something you need to want to do for you and not for some one else. I think I didn't get to drive for 6 weeks. Not because of me - because if there was an accident - the air bag and the seatbelt would be a problem. I've invented a pillow for use in the car (because the seatbelt irritates it - send me your address and I will send you one to use. My doctor now gives them to all his tram patients. You can use it on the way home from hospital. :0) Anyway, let me know if there's any other questions you have. and good luck.
  • rachel999
    rachel999 Member Posts: 1
    joules112 said:

    I had a tram flap done 14 years ago - back when it was really really new! I'm very happy with my results. I have not yet (lol) had my nipple put on. Though I still am trying to decide if it's worth it. I look good in my clothes and it fills my bra perfectly. It is a difficult recovery but I felt it was worth it not to have something not me inside. It changes temp. just like the rest of my body. Bounces just like a real breast. There is a bit of a different sensation in the reconstructed breast. I have feeling but it's kind of like when your leg falls asleep .... you can feel yourself touching it, but it's just different. Not bad - just different. If you have any questions at all - I would be happy to answer them for you if you'd like. my email is [email protected] It's a very personal choice and it's something you need to want to do for you and not for some one else. I think I didn't get to drive for 6 weeks. Not because of me - because if there was an accident - the air bag and the seatbelt would be a problem. I've invented a pillow for use in the car (because the seatbelt irritates it - send me your address and I will send you one to use. My doctor now gives them to all his tram patients. You can use it on the way home from hospital. :0) Anyway, let me know if there's any other questions you have. and good luck.

    Jules, I'm meeting with a plastic surgeon on 9/2 to find out info regarding tram flap surgery. I have decided to have a bilaterial mastectomy w/reconstruction. I decided on both being removed because over the last 15 years I've had problems w/both. I did have surgery to remove cancer from my L in May and I have a tumor in the R one. I had quintuple bypass surgery 4 years ago and ended up with an additional stay of 3 months for staff infection. I guess, my biggest concern (terrifies me) is getting another infection I won't be able to fight. Your take on this would be appreciated if you've got the time. My e-mail address is [email protected] Thanks and God Bless