Question for those with breast reconstruction. Long, but I am so confused!

I was diagnosed with breast cancer 2 years ago at age 48. I had a lumpectomy, mammosite radiation, and am now taking Tamoxifen. I had a bad reaction to two other cancer drugs I was given. Tamoxifen was the third choice for me.

Fast forward to March 2008. I had a massive amount of presumably scar tissue from the mammosite that the surgeon said we should remove to be 100% that it was not cancer. All was clear. 6 months later I go in for my regular mammogram, ended up with another diagnostic mammogram and ultrasound, all because the scar tissue is back. Saw the surgeon again, who, while examining my other breast found a lump. Back again for another diagnostic mammogram, and ultrasound. It was not found, but the surgeon can till feel it. I will have to have another biopsy. Do to the surgeries on my left breast, I am already smaller and uneven and it is getting worse with weight loss.

I asked the surgeon, at what point do I get to say I am tired of biopsys and test and having to wonder about results. What if I just want my breasts removed? She said I have every right to ask for that now.

So, last week, I went to a plastic surgeon, We discussed TRAM Flap and implants. I think for me, if I do anything, I would probably get the Flap because the breasts are supposed to look more "natural" and you don't have to worry about problems with the implants. I also have the option to just have my breasts lifted and made the same size and shape. I could do that if I am willing to take the chance of another biopsy in the future.

I have also been to a genetic couselor. Breast cancer is in my family, so we are trying to determine if I have the gene mutation. If I do, then mastectomy is a done deal.. If the biopsy is positive , then that makes it a done deal too.

If both test are negative then I have been wracking my brain trying to make a decision. That's why I need the help of you who have been down the reconstruction road. I want to know how it looks, feels, how you feel about it. Are you happy with your choice? I have so many people telling me, just do the mastectomy, but they don't have to look at themselves in the mirror everyday.
 
Looking back, if you were in my shoes, what would you do? I know it is such a personal choice, but I want to hear from those who have had it done. Please let me know how you feel about the results. I am losing sleep over this!

I haven't had breast cancer but I had a friend that did.  She had a very aggressive type of breast cancer and rare also, the idiot doctor she went to didn't do ANYTHING when she was able to feel the knot in her breast!! Told her to come back in 6 months.  Now we realized that maybe first finding it when she did and it already big enough to feel it was maybe too late then.

Now I can give you my experience with a my friend but you know that it's ultimately up to you.

She had her other breast removed and then breast reconstruction.  She very happy to have done so. Unfortunately the doctors doing the surgery saw spots on her lungs and didn't tell her.  This and other things that have happened have made  me more aggressive in my treatment of my heart and not to consider doctors as gods. Doctors dropped the ball not once but TWICE on her case!  She also had her ovaries removed (already had partial hysterectomy).

I had a cyst in my breast a few years back, turned out to be fluid filled. I asked if this is something I'd have to keep up with? Doc said yes, just in case. I said well, let's remove it. So he did. Yeah, I have a scar and a smaller breast but I'm not worried about THAT cyst again.

I'm a person that believes that if there's something wrong or can go wrong, FIX IT. Have a nail in your car tire?? Don't put fix a flat in it but pull that nail out and FIX IT. Never worry about it again.

Boil all of this down and this is what I'd do: remove the other breast and have reconstruction surgery done.  Peace of mind is priceless.


P.S.  I read of a family that had stomach cancer for several generations and so several of the children (adults by now) decided to have their stomachs removed BEFORE cancer could occur and they were living full, healthy lives. 

Thank you so much for your input. Those are the things I want to hear from people. I do know I have to make the decision that is right for me, but it helps to hear what others have dealt with.

Sorry I don't have anything to add except that I wish you luck with this and I hope the decision will come to you with ease.  I think the same way when it comes to whether I have colon cancer again or not,...just take it all out and use a bag or let it get the best of me.  I know you will be fine with which ever you decided.  God Bless
Marylin

Marylin, it is always a dark cloud hanging over you isn't it? I wish you the best by remaining cancer free for the rest of your life.

I had been wondering and wondering why I felt so depressed and why I just couldn't shake that feeling.  I was beginning to think I was crazy.  Then you just hit it on the head with the dark cloud theory, that's why I can't shake this. My markers for my cancer are up and have been climbing up and up with every blood test. Then they changed the way they base the test, so now it maybe because of that.  I was testing 1 a yr then I went back in Feb and she wanted me back in 6 months so I started worrying then, then the test was high and my reg PCP has no clue what planet I'm on at all.  So now I am having labs every 3 months, when are they going to realize it's not going away.  She my doc tells me she has a plan for me and that the type of cancer I have has new stuff coming out all the time.  I have a very rare form of colon cancer that only 1 out of 250,000 people get a yr.  I can't win the lottery but I can get cancer.  Sorry just blowing.  So to not feel the way I feel everyday and to know it's gone and can't come back, I gotta go that way also. I know it's a hard one but to feel this way not knowing is killing me. Thanks so much for your kind words and I wish you luck with what ever way you go here.  When it comes to you, you will know that you made the right decision and will feel like you have had a ton of lead lifted off you.  God Bless and keep us posted.
Marylin

Wow Marylin, you have been through the ringer. That really stinks doesn't it? I am so sorry you are having to go through all the drama and uncertainty. If we have answers then at least we can deal with whatever we have to do.

Please know that I am here for you to vent any time you feel like it. I may not have the answers, but I can sure listen and empathize. Let me know how things come out for you, please.

 Hey there again.  Thats a really tough one.  My friend who had the cancer 12yrs ago with an implant reconstruction is now considering having the healthy breast removed.  She says she is tired of worrying about it, as it is constantly on her mind.  She was not a candidate for the tram flap, so she has an implant on the left side where she had the cancer.  I never thought she would do anything to her healthy breast, but she feels like its a time bomb.  

Its hard to say what you would do if put in this situation when you are not the one who has to look in the mirror everyday.  But I believe in my heart that I would have both breasts removed, even if i had cancer in only one breast.  I have already had a tt, so i would not be able to have a tram.  If it was  me, and I had the option, I would do the mastectomy with a double tram reconstruction.  If I werer to get breast ca now, I would do a bilateral mastectomy with an implant reconstruction.  

I'm a nurse for a plastic surgeon, and worked critical care prior to that.  Seen too many young women die with breast cancer. Had too many friends with breast cancer.  I would not be able to sleep at night unless they were both gone.  As indicated in my other post, I would much rather lose both my breasts than my eye, hand, arm, leg, foot.  Those things happen every day where i used to work at the trauma center.  They really can make very nice reconstructed breasts, especially with the tram.  My other girlfriend who had the tram likes her tram boob better than her real one!  Still planning a mastopexy (lift) so they will match better.  If you could make 2 boobs with a tram (which is very possible if you have enough tissue) then do it!!!!!!!!  

Talk to as many people as you can about it.  But be ready for very differing opinions.  

All the best of luck to you....pls keep us posted!  

You being a nurse for a PS then you really have seen it all I am sure. I have just had such a fear of the scars and the feeling being gone. I really do appreciate the insight from someone on the inside. If you have any more light that you can shed upon those issues, I am all ears. You have given me a lot to think about.

I was diagnosed 3 years ago with triple neg. VERY Aggressive breast cancer.  I also had 10 out of 14 lymph nodes involved.  I had a lumpectomy, axillary node dissection and chemo and rads.  I did the genetic testing & found I had BRCA 1 gene mutation and an 85 % chance or reoccurrance.  I decided on a bilateral mastectomy and reconstruction.  I also had a hysterectomy.  I am a strong believer in the idea that we create our own futures by the choices we make.  I did not want to live my life in fear of reoccurrance, so I had the mastectomy.  Because of the rads, I do not have the results I wanted from the reconstruction, but I am ok with it.

 Bottom line, it is a personal decision, but it is important to think about what you want from the future.  I choose to live without the fear of the monster returning.

Good Luck and if you want to talk, let me know.

Joyce