delayed reconstruction? stories please!

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jdubious
jdubious Member Posts: 113
edited March 2014 in Breast Cancer #1
Hi,
I'm totally done with treatment (surgery - left mastectomy 7/16/05, chemo, radiation was complete May 2005)and I'm looking at reconstruction. I was really set on a TRAM, but the recovery time is putting me off. I'm starting to consider an implant, but some of the things I'm reading mention that they aren't the best choice after radiation.

What experiences have you had with delayed reconstruction? Was recovery really 6 weeks for a TRAM? When could you do everyday things like walking, or sitting at a desk? From what my DR says, the bulk of recovery is for the tummy area. Is there major pain or just major discomfort? She demonstrated for me by having me bend over and pinching my (generous) belly and having me stand. It was very pinchy, but not unbearable.

I would love to hear your stories - what reconstruction procedure have you had, what was recovery like, are you glad you had the procedure?
thanks - I'm looking forward to your stories!
jill

Comments

  • 24242
    24242 Member Posts: 1,398
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    There are some of us out here who have made it a choice not to reconstruct for various reasons. You too need to know that I have become very comfortable now especially after having the other removed. Not so comfortable when one puppy still existing though. I didn't like what I was reading or like information I found especially since having so many problems right from surgery on. I am like that woman on Oprah who was model and all and she said she felt more a woman after loosing her breasts than she ever did living the life she had. I have to say I feel the same.
    Just something to think about another perspective is all.
    Tara
  • DebRoa
    DebRoa Member Posts: 31
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    I don't know where you are located, but check into the DEIP if you can. Its available many areas. It does not use the muscle that the Tram does. It is still invasive, but I wish I had had the option of the DIEP. I did not know about it though.

    Deb
  • docholly
    docholly Member Posts: 16
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    I had TRAM surgery a year ago (bilateral). The pain was not as bad as I had thought it would be. THe first month post-op was tough in terms of mobility. I was driving after 6 weeks and back at work after 2 months (admittedly, I have a desk job). One year later, I feel completely like myself except when I try to do sit ups (not that I did them well before surgery...). The texture of the "breasts" are a lot like they were before the surgery, so I am pleased about that. But I think you have to allow yourself 6-8 weeks for recovery. The only other thing I would mention is that I have much reduced sensation across my entire abdomen because they disrupt many of the nerves when they pull the flap up. I wasn't told about that ahead of time. It's a little weird.
  • cruf
    cruf Member Posts: 908
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    Hi! I had a Tram Flap 5 1/2 years ago. It was no where near as bad as I had expected. I'm not saying it wasn't difficult but I anticipated much worse. I was able to drive after about 2 weeks and back to work parttime(I'm a Physical Therapist in a nursing home) and back on the tennis courts in 7 weeks. Yes, it was hard at times and uncomfortable but totally doable. I never felt that I should have done it another way. If I had to do it again, I would do it the same way. I still have tightness in my abdomen and am unable to do situps the right way but you learn to adapt. I'm also numb up my abdomen and breast but you do get used to it. If you have any questions, please feel free to e-mail me here and I will try to help you out. Good luck! HUGS!! Cathy
  • littleladi
    littleladi Member Posts: 11
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    I have scheduled my tram flap. It's scarey! But the only way to get to the other side is straight through. It's great to hear from someone like Cathy who did it and found it easier than expected. I have already been through lumpectomy and radiation and reconstruction on both breasts after that. Then had a recurrance in the same breast. Surgeon says tram flap is my best option. He wouldn't do any kind of implant because of the radiation damage. I had a hard time healing with the reconstruction I had after the first cancer and I got an infection after the mastectomy. While not looking forward to it, I am too young to wear clothes to my neck for the rest of my life and pack a prosthesis, like I did the first year, when I have an alternative. I don't want to wear a bikini: just normal V and scouped necklines and not have a lump shift to the middle of my chest when I'm not paying attention!
  • jdubious
    jdubious Member Posts: 113
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    I have scheduled my tram flap. It's scarey! But the only way to get to the other side is straight through. It's great to hear from someone like Cathy who did it and found it easier than expected. I have already been through lumpectomy and radiation and reconstruction on both breasts after that. Then had a recurrance in the same breast. Surgeon says tram flap is my best option. He wouldn't do any kind of implant because of the radiation damage. I had a hard time healing with the reconstruction I had after the first cancer and I got an infection after the mastectomy. While not looking forward to it, I am too young to wear clothes to my neck for the rest of my life and pack a prosthesis, like I did the first year, when I have an alternative. I don't want to wear a bikini: just normal V and scouped necklines and not have a lump shift to the middle of my chest when I'm not paying attention!

    I love your reasoning - I couldn't have put it better - I'm only 45 but I dress like my grandma! Not only do the prosthetics move around, they float!
    Thanks for sharing your stories!
    jill
  • mychild
    mychild Member Posts: 1
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    Hi, I just went thru a mastectomy and reconstruction 3 wks ago. I had the latissimus dorsi flap procedure; a method that they use the long flat muscle of the back my rotating it to the chest are. My back feels kind of num and tight if I could say. It doesn't hurt as much I could sit, walk,and lay flat on my back with very little or no pain. My breast looks great It looks almost like my other one the only things that its more perky. I'm still in recovery buy I could go back to work if I really had to do so. I really think this was a great choice for me. I hope this info could help you and good luck.
  • HollyAnn
    HollyAnn Member Posts: 2
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    I had the Tram flap in 2001, had bilatural mastectomy in 1998. I felt for myself that i had a forgien object taken out of my body i was not going to put one in, meaning implants. Yes the recovery time is somewhat long, however to me it was worth it. It is all natural.
  • jdubious
    jdubious Member Posts: 113
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    HollyAnn said:

    I had the Tram flap in 2001, had bilatural mastectomy in 1998. I felt for myself that i had a forgien object taken out of my body i was not going to put one in, meaning implants. Yes the recovery time is somewhat long, however to me it was worth it. It is all natural.

    Thanks for all your stories! I'm looking at the DIEP procedure - it's what I wanted all along, but they don't do them at Swedish (that's where I've had all my treatments) but it turns out they do them at the University of Washington, here in Seattle, and they no longer do TRAM. I have an appointment next month to get the ball rolling.
    jill
  • krkath
    krkath Member Posts: 72
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    jdubious said:

    Thanks for all your stories! I'm looking at the DIEP procedure - it's what I wanted all along, but they don't do them at Swedish (that's where I've had all my treatments) but it turns out they do them at the University of Washington, here in Seattle, and they no longer do TRAM. I have an appointment next month to get the ball rolling.
    jill

    Can anyone tell me what the DIEP Procedure is? My surgeon recommended the Lat Flap under arm procedure. It scares the heck out of me. At this point I'm looking into the light weight foam prosthesis cuz the one made of rubber is way too heavy for me. Still at 8 months recovery from heavy chemo and radiation and still have bone pain. I know it will take at least a year to get close to being more normal and not in pain. But interested in that DEIP you guys are talking about.
    Thanks,
    Kathy
  • jamjar62
    jamjar62 Member Posts: 135
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    krkath said:

    Can anyone tell me what the DIEP Procedure is? My surgeon recommended the Lat Flap under arm procedure. It scares the heck out of me. At this point I'm looking into the light weight foam prosthesis cuz the one made of rubber is way too heavy for me. Still at 8 months recovery from heavy chemo and radiation and still have bone pain. I know it will take at least a year to get close to being more normal and not in pain. But interested in that DEIP you guys are talking about.
    Thanks,
    Kathy

    I had DIEP reconstruction almost 3 years after diagnosis. Just wasn't ready for it before then.

    I live in the Houston area and here is my surgeon's website: http://www.breastrestoration.com/dras.html

    Click on procedures on the main page and it takes you to pics and an explanation of DIEP.

    I was in the hospital for 5 days...3 in ICU. Not because I was that sick but my surgeon wanted the flap (and me) to have round the clock nursing care. I must say that those 3 days in ICU were pretty miserable. The room was kept very warm (90 degrees) to encourage the flap to take. Plus I was under a bear hugger which is a plastic blanket with hot air blowing through it. When I woke up in the ICU, I was soooo hot and uncomfortable. I wanted to say "You, you and you, out of the room. Take this damn plastic blanket off me. I'm going home!"

    By day 4, I was in a regular room and up and walking with minimal pain. As a matter of fact, after they took the morphine drip off when I left ICU, I never took anymore pain meds.

    About 2 weeks later, I was riding my bike and fishing with my son. The worse part is the drains...2 in my lower abdomen (try hiding those) and 1 under each arm. The good part is that you get a tummy tuck when they harvest the flap from your belly.

    IF you have any other questions about DIEP, just email me here and I will get back to you.

    Karen
  • mellen
    mellen Member Posts: 1
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    I had my mastectomy and a pedicled tram flap reconstruction done all at once. I realize you're not in the same situation, but I just wanted to get it all over with. This was exactly 3 years ago. I had ductal carcinoma with a micro-area of invasive cells--negative lymph node involvement--no radiation.
    I had a GREAT surgeon and a terrific PS. He made all the difference in my experience. He wasn't happy till I was happy with the results. I had a reduction made about 3 months afterward, then a tattoo and nipply construction. I'm happy with all of that. Now for the less pleasing parts:
    Numbness in the reconstructed breast, along the solar plexus and parts of my abdomen. The scars aren't bad--I rubbed them daily with oil. Occasional twinges of nerve pain--not bad. I am a moderately active person and was concerned about my lack of strength in tummy muscles post-op. My back was also hurting post op, I think because of the strain put on my core trunk area. So I decided to get strong again. I've been doing Pilates for the last 2.5 years. I started about 6 months after the operation. I can now do Pilates curl-ups if my feet are anchored. Curl-downs are a snap. My back pain is minimal (normal for a person with a slight scoliosis). I love the Pilate regime because it concentrates on the core trunk muscles. You learn to use those underlying oblique tummy muscles and your butt to do the sit ups. Without a fully functioning rectus muscle--it was harvested for my breast reconstruction--your body learns to adapt.
    I would've like to have had the choice of a DIEP or free flap, but these weren't options at my HMO.
    I think flap reconstruction is MUCH preferable to implant, particularly if you want to feel almost whole again!
  • Sarah06
    Sarah06 Member Posts: 30
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    If you want to use your stomach for breast reconstruction use the DIEP. It only uses tissue and fat from your stomach. It does not use muscle like the Tram does. Once you remove muscle from one area of the body and transfer it to another area of the body, the donor site can experience problems and complications. Please look into a Diep.
    Sarah06
  • littleladi
    littleladi Member Posts: 11
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    mellen said:

    I had my mastectomy and a pedicled tram flap reconstruction done all at once. I realize you're not in the same situation, but I just wanted to get it all over with. This was exactly 3 years ago. I had ductal carcinoma with a micro-area of invasive cells--negative lymph node involvement--no radiation.
    I had a GREAT surgeon and a terrific PS. He made all the difference in my experience. He wasn't happy till I was happy with the results. I had a reduction made about 3 months afterward, then a tattoo and nipply construction. I'm happy with all of that. Now for the less pleasing parts:
    Numbness in the reconstructed breast, along the solar plexus and parts of my abdomen. The scars aren't bad--I rubbed them daily with oil. Occasional twinges of nerve pain--not bad. I am a moderately active person and was concerned about my lack of strength in tummy muscles post-op. My back was also hurting post op, I think because of the strain put on my core trunk area. So I decided to get strong again. I've been doing Pilates for the last 2.5 years. I started about 6 months after the operation. I can now do Pilates curl-ups if my feet are anchored. Curl-downs are a snap. My back pain is minimal (normal for a person with a slight scoliosis). I love the Pilate regime because it concentrates on the core trunk muscles. You learn to use those underlying oblique tummy muscles and your butt to do the sit ups. Without a fully functioning rectus muscle--it was harvested for my breast reconstruction--your body learns to adapt.
    I would've like to have had the choice of a DIEP or free flap, but these weren't options at my HMO.
    I think flap reconstruction is MUCH preferable to implant, particularly if you want to feel almost whole again!

    While DIEP is, I am sure, 'better' overall, I had radiation for the first cancer and therefore am being told the blood flow the muscle brings with it in tram flap is most important. Radiation has damaged the blood vessles in the chest and trying to tie them to tiny vessles in the stomach as it is brought up will set me up for a higher potential of rejection. I believe there should be a better understanding of what radiation does at the beginning of a cancer diagnosis. I got only this general: it's hard on you, and that was focused more on going through it, not what it ravages and leaves behind for the long run. If I'd known then . . . But I didn't. I didn't know my cancer would come back. I didn't know the radiation would up the chances for infection (which I got after mastectomy) and impeed future reconstruction choices (implants are not an option.) I didn't know a lot. I go forward with the best choices I can. Tram flap in 18 days. Then life as best I can live it from there.
    Things keep happening to make we want a second bump on my chest for balance and symetrical clothing and hot weather comfort.
  • shirley2b
    shirley2b Member Posts: 2
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    krkath said:

    Can anyone tell me what the DIEP Procedure is? My surgeon recommended the Lat Flap under arm procedure. It scares the heck out of me. At this point I'm looking into the light weight foam prosthesis cuz the one made of rubber is way too heavy for me. Still at 8 months recovery from heavy chemo and radiation and still have bone pain. I know it will take at least a year to get close to being more normal and not in pain. But interested in that DEIP you guys are talking about.
    Thanks,
    Kathy

    Your delayed reconstruction was wrote so long ago you will most likely not read or get this. I too had both breast removed very strong chemo and radiation. I found out I had the BRCA1 gene and had my ovaries removed. I have looked into reconstruction and all that is offered to me is Latiss Flap. What is the Deip I am reading about
    Shirley