TRAM vs. DIEP

sostendorf
sostendorf Member Posts: 14
edited March 2014 in Breast Cancer #1
I was diagnosed at age 36 with DCIS with small invasive margins (5mm) in March, 2000. I underwent lumpectomy and radiation. My oncologist has recommended preventative bilateral mastectomies as I have family history bc. I want to do reconstruction at the same time. I am considering subcutaneous mastectomies to keep my own skin and nipples. I was set to do tram reconstruction, but after reading several chats about it am now having second thoughts. I have also been researching DIEP although I'm not sure that can be done subcutaneously. I'd like to hear from those who have had either of these procedures and wonder how things went for you and if you are happy with the outcome. I'm especially interested in two things. If you did tram, what kind of abdominal weakness do you have now and how much does it limit physical activity. If you had diep, did you have radiation first and was there a problem with connecting the vessels because of damage to the radiated blood vessels in your breast area. Also, were you able to have a nipple formed on the radiated side. I've also found the talk of the muscle "fold" with tram troubling as I am not looking at a free-tram but the "tunneled" version. I'd appreciate some advice from those who have been down this road.

Thanks!

Comments

  • SusanAnne
    SusanAnne Member Posts: 245
    I had a TRAM but only on one side. My cousin, however, just went thru bilateral skin sparing mastectomies with DIEP reconstruction. Hers were done prophylacticly so no radiation was done. She is pleased with the results but did have complications from being under anesthesia for the 17 hours it took. I don't know about everyone else's experience, but I found that the surgeons tend to undersestimate the length of the procedures. I must say that my cousin's recovery from the surgery itself seems to be much easier than mine was.

    When you talk of muscle "fold" what exactly do you mean? I had the tunneled version. I experienced much more pain than I ever expected. I'm not sure how much help I can be to you considering I had just the one side done, but if I can answer any other questions for you just ask.

    Susan
  • sostendorf
    sostendorf Member Posts: 14
    Susan,
    Thank you for responding. I read on another web site a conversation between two women who had both had tram flap reconstructions. They both were "complaining" about the ridge they could feel where the muscle was folded over to bring it up into the breast area. Do you have anything like that? They said it was right below their breastline and bras had to sit above it or below it causing discomfort. Also, how do you feel your abdominal strength is compared to before the reconstruction? Where did your cousin have her DIEP done and what was the doctor's name? There's nobody in my area who does that (Iowa) so I'm going to have to travel. I've been looking at New Orleans just because I know someone who's been there. It's GREAT to have someone to talk to who's been through all of this! You're a God-send! -Sandy
  • cruf
    cruf Member Posts: 908

    Susan,
    Thank you for responding. I read on another web site a conversation between two women who had both had tram flap reconstructions. They both were "complaining" about the ridge they could feel where the muscle was folded over to bring it up into the breast area. Do you have anything like that? They said it was right below their breastline and bras had to sit above it or below it causing discomfort. Also, how do you feel your abdominal strength is compared to before the reconstruction? Where did your cousin have her DIEP done and what was the doctor's name? There's nobody in my area who does that (Iowa) so I'm going to have to travel. I've been looking at New Orleans just because I know someone who's been there. It's GREAT to have someone to talk to who's been through all of this! You're a God-send! -Sandy

    Hi! I had a tram flap just over 4 years ago. I don't know what the ridge is that your friends are speaking about. My bra fits just like it did before. I do have a ridge running up my abdomen where the mesh and titanium clips are but I'm thin so it's very close to the surface. It doesn't bother me at all other than feeling tight. As far as my abdominal strength, I can do everything I did before except a situp. I can use my legs to pull myself up or turn sideways to sit up but because the rectus abdominus muscle is what they disconnect and tunnel up to make the breast, therefore,it doesn't work on the stomach anymore. I am a PT and work in a Nursing Home and can still do all my job as I did it before and that consists of alot of lifting. I was also able to return to playing tennis 7 weeks after my Tram Flap so it's possible to return to normal pre-surgery activity. HUGS!! Cathy
  • seeknpeace
    seeknpeace Member Posts: 259
    Hi! I had a bilateral with a tram on Feb 4, 2004. I did research the diep and if it would have been offered here, I would have definately done that. The tram is a very disabling surgery, but, for me, I feel almost normal. The one thing that bothers me is that even with the mesh lining in my lower abdomen, the lower area is beginning to round out. I really hate that because with the tunneled vs like I had, and with the muscle crossing/bundling right beneath the breast area, I am not happy with that look at all. One thing that I would suggest that anyone ask of their doc is if they have to have it where they cannot use their skin/nipples afterward, as I was not able to, tell the doctor to be conscience of how the scars will be. Not too far to the outside or the inside of the breast. Mine gave me a difficult time wearing a swim suit this past summer and I was very upset about that. The scars would show. As for the bottom area scar, I have not had the pocket or flap thing that you mentioned. I did have a problem with the way the scars looked at the bottom of my abdomen on the sides They were indented, making it seem as if I had a band around my lower ab. My doc did scar modification for me.

    Would I do it again? Yes. Definately. I do not have a good comfort level with implants, so if I wanted to reconstruct it needed to be tram or diep. I would love to still have my ab muscles. However, I do not feel that I cannot do anything pretty much that I want to. Your obliques, I think that they are called, on the side of your body take over a lot of the muscle activity that you need. It is surprising. I do not feel disabled from the tram at all. I did have nipples done and he put them too low, against my wishes. So, he is snipping them off at the end of the month and making new ones when that heals. Men! Jan
  • sostendorf
    sostendorf Member Posts: 14
    Thanks, everyone, for the very helpful advice. I think maybe I was confused about the "ridge." It sounds like maybe the ridge they were talking about runs up the abdoman rather than across the braline. One more question. Did any of you have your procedures done because of prophylactic mastectomies or did you do it at the time of diagnosis? My mother had bc at age 51 (22 years ago). She is still alive and kicking with no reoccurance or 2nd primary. What kind of advice were you given about reoccurance or development of 2nd primaries. I know my situation is different from my mother's because of age, but I'm feeling like all my choices suck! My oncologist has told me 50/50 by the time I'm 50 or take prophylactic measures. I'm not thrilled with either option but don't really want to have to face the worry for the rest of my life. How are you all dealing with that dilemma? Thanks again! -Sandy
  • SusanAnne
    SusanAnne Member Posts: 245

    Thanks, everyone, for the very helpful advice. I think maybe I was confused about the "ridge." It sounds like maybe the ridge they were talking about runs up the abdoman rather than across the braline. One more question. Did any of you have your procedures done because of prophylactic mastectomies or did you do it at the time of diagnosis? My mother had bc at age 51 (22 years ago). She is still alive and kicking with no reoccurance or 2nd primary. What kind of advice were you given about reoccurance or development of 2nd primaries. I know my situation is different from my mother's because of age, but I'm feeling like all my choices suck! My oncologist has told me 50/50 by the time I'm 50 or take prophylactic measures. I'm not thrilled with either option but don't really want to have to face the worry for the rest of my life. How are you all dealing with that dilemma? Thanks again! -Sandy

    Hi Sandy,

    OK, I think I know what you mean by the muscle fold now. I'm not quite sure what it would be like when a double TRAM is performed but my surgeon used the muscle on the left side to reconstruct the right side. This was done as a precaution just in case the radiation had compromised the right muscle. Therefore, my "fold" is in the center. It really doesn't get in the way. During my revision surgery, my doctor reduced it somewhat by putting in some deep sutures and he also tells me that it will atrophy over time and reduce further. As far as abdominal strength, I don't have a problem. I must say though that I could feel things tightening up over the last 2 months (I've slacked in my exercise program) so it's important to stay active.

    My cousin had her DIEP surgery here on Long Island, however her hospital experience was not pleasant so I wouldn't feel good about recommending it. Have you been on the website, "True faces of breast cancer"? Dr. DellaCroce answers questions there and you will find many others who traveled there for the surgery.

    As far as dealing with the recurrance issue, it is a very personal thing. I was 46 when diagnosed, almost 47 when I had the delayed TRAM reconstruction. I pretty much decided that regardless of whether or not cancer would visit me again, I wanted to enjoy the sensation I had left and I wasn't about to let the fear of what MIGHT happen rob me of that. On the other hand, you have my cousin who didn't even have cancer (she had LCIS) and she couldn't live with the fear hanging over her head. Everyone is different. You really have to dig down deep and find out your true feelings. I actually surprised myself because I originally started out thinking I would do both. My dream would have been to do a subcutaneous mastectomy prophylacticly on the left and bilateral TRAM reconstruction. But when my plastic surgeon couldn't assure me that I would retain sensation I gave up the idea. I wish you all good things in your decision making. Take your time with it and you will know what is right for you.

    Susan
  • martyzl
    martyzl Member Posts: 196
    Hello Sandy!
    Sorry to come in so late...
    I had a single Tram on the right side. (37yrs old) No radiation (which I hear can affect the skin texture/quality).
    I could not keep my nipple as it had to be taken "just in case".
    Overall, I am very happy with the outcome. (But see my web page in here to hear how I felt immediately afterward!)
    In fact, at my "tram'o'gram" last week, the tech was very impressed with my Tram, even complimented me on it! *grin*
    No real abdominal weakness to speak of. Have done yoga, lifting, chicken herding... you name it... have not noticed any limitations in 2.5-ish years.
    Muscle fold- yes, I am one of the whiners in this realm... I have a soft bump below/between the breasts where the muscle was folded. It did atrophy to a point but it still flexes if I do sit-up type movements. *shrugs* My abs were too strong, perhaps? It's not really noticeable any longer.
    Reconstructed nipple was interesting- the area of abdominal skin where the areola used to be was flat & still had fine, soft belly fur. *laughs* And it was growing UP!!! Silly me, I only just realized that I could pluck it out!
    Nipple recon.- well, it looked lovely initially but the bottom half gave up the ghost shortly afterward and now it's half sized, and not really noticeable comparatively in clothing and such. Otherwise, I think it would have been lovely. I am quite partial to my plastic man, though...*smiles*
    My plastic man left me with very little noticeable scarring, he's fanatical in that area as well... but... *I* am not a very good patient, to his chagrin. I was out playing badminton and am rather... enthusiastic. I stretched my scars out before they were fully healed. *rolls eyes* I don't really mind. I am not averse to others seeing my scars. I have a really, really nasty looking one on my chest from my port. (more over-activity too soon, even after revision!) My scars remind me of what I have gone through and that it's great to be here!
    I have even met people who recognize my scar as that from a port... starts all manner of interesting conversations.
    I may not be typical, however. In fact, I am rather sure that I am not. *smiles*

    I wish you well and hope that you find the answers you seek and are pleased with whichever path you choose!

    Be well!
    ~marty
  • sostendorf
    sostendorf Member Posts: 14
    Just wondering . . . are any of you still having mammo's done on the reconstructed breast(s)? An oncologist I saw along with a ps told me I would never have to have mammo's again after reconstruction because there is no point in x-raying abdominal tissue and any breast tissue remaining is so close to the surface that mammo's are not necessary. What have your doc's told you?
    -Sandy
  • martyzl
    martyzl Member Posts: 196

    Just wondering . . . are any of you still having mammo's done on the reconstructed breast(s)? An oncologist I saw along with a ps told me I would never have to have mammo's again after reconstruction because there is no point in x-raying abdominal tissue and any breast tissue remaining is so close to the surface that mammo's are not necessary. What have your doc's told you?
    -Sandy

    Well Sandy, I didn't think I'd need to have mammograms on the reconstructed side either... I asked the surgeon if he got **all** of the breast tissue. Yes, he said. How can you be sure? He just did, it was a complete mastectomy. Ok....
    then my Onc. said it would be a good idea to do a mammogram on the Tram. Well, finding a place that was experienced in reading "tram'o'grams" was not very easy so I didn't pursue it. (Silly, I know.)
    Well, once I gave birth and my milk started coming in I learned that I have a one inch by 3 inch "bar" of breast tissue along the bottom of my Tram as well as a good sized lump of it still under my arm. Talk about discomfort!!! (I am successfully breastfeeding our baby with my remaining breast)
    *shrugs* Well, at least I *know* where it is now... but what about everyone else?? Please do be aware that there may be tissue left behind... it's evidently not always so easy to make sure that you have it ALL! I guess that would be a good reason to have "mammograms" after mastectomy and reconstruction, yes?

    Sandy, talk to other Oncologists and do some research into it.. I have been converted, though my cancer was not found on a mammogram, it was the ultrasound which showed it due to the extreme vascular involvement. My breast tissue was too dense to show the tumours...

    Be well and best of everything for you!
    ~Marty
  • martyzl
    martyzl Member Posts: 196

    Just wondering . . . are any of you still having mammo's done on the reconstructed breast(s)? An oncologist I saw along with a ps told me I would never have to have mammo's again after reconstruction because there is no point in x-raying abdominal tissue and any breast tissue remaining is so close to the surface that mammo's are not necessary. What have your doc's told you?
    -Sandy

    Well Sandy, I didn't think I'd need to have mammograms on the reconstructed side either... I asked the surgeon if he got **all** of the breast tissue. Yes, he said. How can you be sure? He just did, it was a complete mastectomy. Ok....
    then my Onc. said it would be a good idea to do a mammogram on the Tram. Well, finding a place that was experienced in reading "tram'o'grams" was not very easy so I didn't pursue it. (Silly, I know.)
    Well, once I gave birth and my milk started coming in I learned that I have a one inch by 3 inch "bar" of breast tissue along the bottom of my Tram as well as a good sized lump of it still under my arm. Talk about discomfort!!! (I am successfully breastfeeding our baby with my remaining breast)
    *shrugs* Well, at least I *know* where it is now... but what about everyone else?? Please do be aware that there may be tissue left behind... it's evidently not always so easy to make sure that you have it ALL! I guess that would be a good reason to have "mammograms" after mastectomy and reconstruction, yes?

    Sandy, talk to other Oncologists and do some research into it.. I have been converted, though my cancer was not found on a mammogram, it was the ultrasound which showed it due to the extreme vascular involvement. My breast tissue was too dense to show the tumours...

    Be well and best of everything for you!
    ~Marty
  • littlelindalu
    littlelindalu Member Posts: 25
    There is a group called DIEP Sisters that maintains a database of recommended drs who do these tissue transfer surgeries all over the US. The DIEP/SIEA and GAP appear to avoid many ab problems -- as do some of the free-TRAMs. You must be careful about the dr -- research a lot, ask a lot of questions and talk to women who had surgeries with him/her 6mos to a year ago to see how they healed. From what I have heard/read any dr who does less that several hundred procedures per yr is not experienced enough -- any who cannot complete your surgery in less than 3-5 hrs for a single and 6-10 hrs for a double is not good enough (which means that a team is better than an individual dr for these procedures), and any who will not be willing to tell you just how often he/she does them and for how many yrs (both important) are not the dr for you.

    I had double subcutaneous mastectomies (skin-sparing) with reconstruction. Would be happy to talk to you. Email any questions you have.