Ladies, What are we doing to ourselves? I have come to the conclusion that, having this choice again, I would make different decisions. Two years ago I had a unilateral mastectomy with immediate TRAM Flap reconstruction and 2 subsequent surgeries to repair a resulting hernia. It wasn't my doctor, it just happened. That trouble started when I reached from my chair to turn on a light. I just read a study following 2 doctor's patients for 20 years that had no long term problems with their TRAM Flaps and breast reconstruction. Reading this forum of just people with bulges in their abdomen makes you know there are problems happening, though. I have concluded that there is no surgical free lunch - we gain a breast and a feeling of physical female "normalcy" in trade for 6 months or longer recuperation and the potential of problems for years, sometimes for the rest of our life. I ended up with a piece of synthetic mesh almost the size of a placemat, moderate pains in both surgical sites that come and go with no particular activity or timetable, and restriction forever on the weight I can lift, of which I am constantly reminded. My reconstructed breast is more normal looking than I would have thought possible but I chose not to have nipple reconstruction - enough is enough! Despite being a size D, I wear bras similar to what we used to call "training" bras - no underwires (never liked them anyway), composed of a fabric that stretches to accommodate because the breasts are 2 different sizes - my reconstructed breast is larger and attaches to my chest further down and I choose not to have it re-sized. Again, I've had enough. (I had 2 additional surgeries in this time, too. A lumpectomy and in the middle was a bilateral salpingo-oophorectomy (ovaries and fallopian tubes removed).) My belly button is gone - it had been relocated twice and when grafted to a new location during my third surgery, didn't take. The scar looks like a belly button if you don't examine it closely. No big deal, either, but you see what I mean about complications you never imagined. Saying you won't be able to do sit ups is a giant understatement. You won't be able to do anything the same that uses those muscles - get out of bed, turn over in bed, get in a car (particularly the passenger side for me), get out of a chair, or climb steps, for example. You learn how to accommodate, but it's different. I ride a bicycle and I think I have trouble going up hills because of the missing strength on one side. Maybe not. Maybe I was never going to be any good at hills. (Just finished a 4 day, 120 mile bike trip.) The good news is that the cancer is gone and I can look forward to a longer life because of it, but if I had just cut out the cancer and left the rest alone, would it have been better? I can't say for sure - I chose reconstruction and can't go back. Would breast-less have been such a bad thing given the risks of problems from the reconstruction? Unfortunately, we have to decide without knowing what our individual outcomes will be and we unknowingly try to replace what we had instead of choosing the safety of no reconstruction, breast absence, and no resulting complications. For reference sake, I'm 60 years old.

2000 DCIS lumpectomy, radiation, Tamoxifen 5 years 2010 DCIS lumpectomy, mastectomy, immediate reconstruction with TRAM flap; surgical hernia repair with natural mesh; bilateral salpingo oophorectomy 2011 abdominal repair-component separation with synthetic mesh

Hi Hopeful, 

There are many different expereiences with the options of reconstruction.  I, for one, chose not have any of the 'tissue transfer' surgeries because I did not want to go through the surgery and the recovery - even if it were guaranteed that nothing would go wong.  I think, had I been youger (I was 66) I might hae chosen differently.  So I had an expander and an implant  9 months after radiation.  It looks perfect but feels as if it's stuck to my chest because it doesn't move due the effects of the radiation.  My only option would be Tram Flap surgery and that ain't gonna happen :)

i am very happy that I chose not to do any of the tissue transfer surgeries, but each of us had to decide what is best for ourselves.  I didn't even hae a nipple tattoed on to what I call my "bionc boob"... I use various kinds of temporary tattoos to dress her up :)

Many women on this site have had different problems with their reconstruction and I'm sure they wlll respond to your post.  I am certain too that there are many women who were quite satisfied.

Sorry for your surgical issues......

Hug
Elaine

 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 

I'm sorry for the issue's you've had too Hopeful and there have been a few of my friends who had problems too, its a shame there's no fool proof method as yet but I'm sure you'll hear from many about this on both sides of the fence! It was'nt a decision I had to make as I had a lumpectomy but I can honestly say if I had to make it I have no idea what method I'd choose!

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Hopeful,
I'm sorry that your reconstruction is causing you problems.  Please don't beat yourself up.  When we are faced with the initial reconstruction decision, it is often a time we are feeling frightenend and vulnerable.  The results we get can be affected by so many things, some of which are out of our control.  Do doctors overestimate their abilities? maybe...do we as patients have unrealistic expectations? maybe  Can one tiny complication cascade into a waterfall of problems?  maybe... But you don't know if there would have been other complications, even without reconstruction. It remains the unknown.
 
Could you consult with a physical therapist who might be able to design a fitness program to strengthen around the problem weaker areas where the muscle was removed, to compensate for the loss? Or perhaps a personal trainer . I hope that there is something available to you that will improve your QOL.
 
I was fortunate to have no complications from my reconstruction.  I interviewed three plastic surgeons with one goal in mind...my passion for skiing.  I needed the ablility to upright myself on a steep slope if I were to fall (ha, even though I'm not nearly as wreckless on the skis as I used to be).  It was the reason I went with a DIEP, rather than a TRAM.
 
Aside from the newest techniques being used @ NOLA, that claim to preserve sensation, the best we can hope for is a breast shaped blob that "looks good".  It certainly is the part of tx that doesn't let you forget.  I guess the best we can do is accept:(.  of course I'm speaking of appearance, not function.    
Sending you hope that you might find  help for the abdominal issue.

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

Hi. As someone who also had post-TRAM problems, I can commiserate, but since I am out almost 26 years from my cancer, I have a somewhat different perspective. First, I have no idea whether your doctor was at fault with regard to the hernia/tram flap bulge (it's not really a true hernia). You seem to think not, and you're probably right. I had the TRAM in 1993 after a botched reconstruction with implants in 1988. Unfortunately, I chose a surgeon who was not experienced enough (my fault, of course), and the result was horrendous. I had two lumps of tissue that did not resemble breasts, plus a major tram flap bulge almost immediately. I hated the results, but due to money and my feelings of guilt (stupid) and not wanting more surgery, I just lived with it. Finally, in 2007, I found a surgeon who really knew what she was doing--she had studied at Stanford under the doctor who pioneered the TRAM. She put me back together and explained all of the things the previous surgeon had done wrong. I have had no recurrence of the tram flap bulge. I also want to say that I can do everything that I did before--get in and out of a car, get out of bed, up from a lying-down position--and if I were so inclined, I think I could do sit-ups. (I'm 62) I'm not dismissing what you said--not at all. I'm telling you this because this is all fairly recent for you. You might find that, with time, you learn to adjust your movements and use different muscles to accomplish movement. I'm quite sure that's what happened with me. After my 2007 repairs, I was scared about getting another bulge, so I was very conservative. But with time, I've relaxed more and find that I can do more than I thought. Having said all of this, I agree with you that this surgery changes us forever. It is not easy to accept. I still don't feel "normal," and I always have in the back of my mind that my abdominal area is vulnerable. I can't change these things, and they make me angry sometimes, but I have learned to accept things better with time. So give yourself some time, try things little by little so that you don't hurt yourself, and I hope that your experience will be like mine. I truly wish you the best because I know what you're going through. 

Rena age 63 California Central Coast
26-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

What I really wanted to convey with my message is that you don't know what you don't know when going into this process. To say that you won't be able to do sit ups as a side effect of the surgery is such an understatement for most of us that it is almost laughable. Nobody regrets giving that up! I want others to understand the possibilities and make decisions based on as much information as possible so the surprises will be minimized. The medical community isn't going to give you info that they don't even realize because they haven't been there. I did not know about the bulge issues, for example, and devised my own "treatment" for awhile. I agree we must each decide for ourselves what is worth giving up to the end result. I'm happy to be where I am in the process and thank each of you for your feedback and inspiration.

I just had a lumpectomy, so I can't even begin to relate to what you're going through. But even that much (that little?) surgery, has changed me physically in ways I'd never imagined. I have really bad scarring from the radiation, and the treated breast is a whole size smaller, and perkier, than the other.*****I am obviously very fortunate that I still have my breasts and am not physiclaly limited, so I know I'm lucky.**** When there was an issue with an MRI before my radiation treatment started, the radiation oncologist called me and quite flippantly (in my mind), stated that maybe I should just "have a bilateral mastectomy and I could get two new MATCHING BREASTS!" as if it were no big deal. I know from connecting with so many of you that reconstruction is a big deal for most of you, and it's never the same as before.***I really hope that things get better for you, Hopeful.....

Portland, OR. DX: 6/09/05 IDC lb Age: 54 PR/HR+ Her- Lumpectomy/SNB 6/22/05 Nodes Neg! 33X Rads Comp 10/12/05 Tamoxifen: '05-'10 PT for lymphydema in breast '06 BRCA Neg 7/08! Tamoxifen induced uterine issues '07-'11 Total LA hysterectomy 12/11

Although there is certainly no "free lunch", this is a timly reminder to do your homework before consenting to any surgical procedure.  Of course it's impossible to know every thing that might have the potential to go wrong, it highlights the importance of searching out and doing as much research as possible before having any type of reconstruction.
 
Talk to women who have had the type of reconstruction you are considering, preferably by the surgeon you have chosen. Talk to more than one...as many as you can find
 
Interview at least two board certified plastic surgeons.  Ask what how  many of these procedures they have done, why they are recommending one type of reconstruction over another( is it because they don't do micro surgery), their success (and failure) rate, what kind of complication is most common in their procedures and what is that complication rate is.  How well will the new breast match the existing, and will revisions typically need to be made. 
Ask to see photos of their work
 
Ask about follow up and what long term restrictions will you face.  Will these impact the things you love to do.(or plan to do)   
 
In Kathy Steligo's book, THE BREAST RECONSTRUCTION GUIDEBOOK, Issues and Answers from Research to Recovery, she writes that the four characteristics of an ideal plastic surgeon are skill, compassion, rapport, and honesty. 
Research, Research, Research.
Nothing is 100% but you can give yourself an edge to make the best decision you can for Yourself.
 

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,