Prophlaytic Mastectomies

My first thought would be to get tested for the BRCA gene.  That way you know what you are up against.  Breast cancer and BRCA2 gene runs in my family, but as of yet, I have not been tested.  I do understand the rollercoaster that you are on. I was dx with ADH in Feb and just spoke with a PS (among others specialist) about different surgeries.  He has suggested that I get tested, that way I will know which road to take.  So for now I will do high risk monitoring with MRI's and mammograms.  I hope to make a decision before my next MRI due in Aug '11.  Like Eileen said, you are a Previvor.  There is a book out for previvors. I forget the name but they have a website www.previvor.com. Previvor's are high risk due to family history or gene positive that have done PBM or any preventive surgery before the cancer. Hope this helps.

Debbie

Hi Meechell83, I just had a prophlaytic bilateral mastectomy and immediate reconstruction on Sept. 14, 2010. I am 56.  I am a 12 year BC survivor.  I was 44 when diagnosed.   Had a lumpectomy, chemo, radiation and was fine until last October.  I  found another lump.  It turned out that lump went away but they saw something in my "good boob".  So at that point I had decided that I will probably have a bilateral mastectomy with reconstruction - so the search went on.  It turned out to be just a watery cyst in my good boob, but as you put it "the stress" was just like reliving the day I was diagnosed.  It was horrible.  I knew then that once I got all the information and doctors lined up, I will have a prophlaytic bilateral mastectomy with recon.  

I am entering my 5th week.  My surgery went well.  I elected to have the muscle sparing TRAM flap reconstruction as I knew that the pair of PS work well together and perform the surgery together so instead of an 8 hr surgery it is cut in half... 4 hour surgery.  Of course, I already knew my breast surgeon from years of mammograms, who I dearly love.

The pain was not as bad as I expected.  I was in the hospital for 4 days, but didn't mind it.  The put an OnQ Pump that pumps pain med's directly into my tummy area - so that alleves long term narcotics and allows for a faster recovery. I also had a pain pump where I can click it whenever i need more pain relievers. I got 4 drains; 1 near each boob, and 2 in the stomach area.  The hardest part of a TRAM (BTW you get a tummy tuck -which I LOVE!!) is that a small part of the stomach muscle is used that is the blood supply for the fat and skin to make the new boob.  So for the first week it is very difficult to get out of bed or the sofa/chair.   I slept reclined for the first 2 weeks so I could get out of bed easily.  Overall, I am happy with the results.  Next is Stage II where I get revisions/corrections to the boobs and nipples.  After that they tattooo the aereola.  Besides the first 2 weeks of being hard to get out of bed, the drains are annoying.  But as of the 3rd week I was able to get in and out of bed without any problems.

So, for me, would I do it again? Yes.  It gives me peace of mind.  

I agree with the other ladies who posted here.  Have you gone thru the genetic testing?  I would highly recommend that before you made your decision. 

I wish you the best.  

Hugs,

Deb 

Hi, I had a PBM with immediate DIEP recon.  I am VERY happy with my decision and would do it again in a minute.  Recovery was not bad at all and especially for someone as young as you, it would be even better.  If you are planning reconstruction, please consider flap surgery.  Check out the NOLA thread.  It's where I learned a ton about options available to me (and most women).

Best wishes.  Do what you feel is right--trust your instincts.

Can I just echo Caren's point-having prophylactic surgery does not remove your risk-but it decreases it by a large amount. But problems can arise more often than you may think. I had a prophylactic mastectomy after having a primary in the left breast. I was subsequently diagnosed with BRCA2 which gave me cause enough to request having the remaining breast removed and  a hysterectomy-to decrease my risk as far as possible. Yet here I am at stage 1V (terminal), with mets to pleura, liver and bones, so it was by no means helpful in my case.

At your age I woud think long and hard -if you're high risk you will be monitored accordingly anyway. I'm not sure why you would think/worry about classing yourself as a survivor of BC if you haven't had BC! The obvious answer, is "no", you haven't had BC so you can't be classed as a survivor! By thinking along this line, you are actually causing yourself even more stress. There is a huge difference between undergoing prophylactic surgery, and surviving a cancer diagnosis. Good luck with your decision.