contralateral prophylactice mastectomy 2 years later

I'm not 2 years out, but I'm almost definitely going back and having a prophylactic mastectomy. I had my original surgery last October. With an ILC diagnosis, which they say frequently "jumps to the other side" and multi-focal spots on the surgical side, I know I'll be just like you: waiting for the other shoe to drop.

Also, even if they catch it early the next time, I just don't want to go through cancer treatment again. This has been grueling.  

I'm not scheduled for reconstruction until November. I'm thinking of having a prophylactic as soon as I get my strength back from chemo/radiation, then having my PS finish reconstruction on both breasts at the same time.

Good luck with your decision. There's a lot to be said for peace of mind.

I had mine done from the start but used my age 35 when lump came/38 at dx, multifocal IDC etc.

I ended up with very small cx being found in the opposite breast so am glad I did.

Good luck with your decision.

Ally, actually my BS never mentioned prophylactic. I wish he had!  My oncologist just says "next time we'll catch it earlier". Well I don't want to go through treatment again. Period.

The reason for my delay is that I haven't spoken with my BS yet. He's the best around, and I want him to do the surgery. I honestly don't think he can talk me out of it, but we still need to have the conversation.

Also, my company may change insurance plans in the next month. So I'm holding off on doing anything because I will probably need to get prior authorization.

Ally,

I had a bi-lateral after a positive MRI and a follow-up biopsy (DCIS) - final pathology was DCIS as well.. I too wanted symetry AND I wanted not to "fear" cancer again - but neither really happens, at least for me..   I did not get symetry nor have I totally lost the fear of recurrence - so after many many sleepless nights I am really sorry now that I didn't just have the lump removed and go on to "watchful waiting".  Now I did have a factor that appeared to created a great deal of fear and more confussion on the part of my doc's so that sort of excellerated my acceptance of a bi-lateral, but if I had given it more time (which you can do with DCIS) stepped away from the fearful doc's I believe now I would have made a different decision.  (My father died of bc)

I miss the sensual sensation that goes along with the breast, I miss the breasts themselves and I never considered myself "identified or defined by my breasts", but they are a piece of Me (you) and frankly what the medical community doesn't tell you or even encourage you to do is get some psychological help for this.. I imagine that if men were asked to give up their b__ls to increase the possibility of less cancer in their future you can be sure that they would first and formost be encouraged to seek out psychological counseling.. Not because there is anything lacking in your or my decision making  capabilities but it is a tremendous loss and a shock to the system (mind and body).. it's not something you (or I) can fully come back from!  And a counselor gives you a place and an opportunity to voice what you truly feel without the influence of the medical community, or even family that may want you here as long as possible (which there is nothing wrong with of course but it can influence you).. it's your feelings that matter and because of the size of the loss I have experienced (and continued to experience 2 years later) I always encourage an individual to go to someone where their voice is the only voice being heard, and of course the purpose is so that you (I) am clear on what your (my) voice is truly saying..

It is a struggle and should be but I hope you are able to find peace with your decision and of course have a good outcome with the reconstruction - Best!!!

Hi Ally

I tested positive for the BRCA gene and after much research chose to have my ovaries removed and a prophylactic double mastectomy 5 years ago.  I was quite concerned about what my reconstruction results would be, particularly after viewing photos available on line of post mastectomy reconstruction patients.  Please research your plastic surgeon well.  I am so happy with my results and I have such peace knowing I made the right decision to minimize my risks.  I had a wonderful, caring surgeon and great results.  Do your research and go forward.  It's a positive step.  Good luck to you.

Hi Ally,

I also chose PBM to improve my chances of symmetry and reduce my risk.  While I am still happy with my decision, I had to have one implant replaced and some capsule removed yesterday.  Capsular contracture developed in one breast 3 months post exchange after I lifted a heavy object awkwardly and developed a seroma.  As far as long term symmetry goes, mother nature and gravity will take its course on natural breasts, but these girls will stay at attention.  They also found LCIS and ADH on the prophylactic side, so I was doubly relieved to be over with it. Wishing you peace with your decision.

Carol(AZ)

Hi Jean,

I thought I was in the clear.  It really was a freak thing jerking a suitcase off the carousel.  I could feel the strain at the time but thought nothing of it until later that day when the swelling started.  They ended up draining about 200cc of fluid.  The capsule seemed to follow quickly on the heals of the seroma.  I'm only a little sore today, but off pain meds.  Is your exchange this week?

Carol(AZ)

1. They want to test me for the gene i had lump removal on March 19,,, B9 now i have bloody discharge from that breast. Two small non palpable lumps also found on ultra, my mother and gram died of BC mom at 44 theywanna test me before doing the MRI bc of false positves, can you tell me how long the test results took and any other info, please u can email me if you will
2. twinklez4ever@aol.com i will pray for you    Im 32 yrs

How about prophylactic surgery 2 years out, after having already gone thru recon for the first mast?!

I'm 57 and in the Fall of 2007 was diagnosed with Stage 1 breast cancer in the right breast.  The very next day my mother, age 82, was diagnosed with her third separate instance of breast cancer.  Her first incidence was at age 72 and got a lumpectomy, 9 years later she got it again in the same breast and had the breast removed - both were estrogen positive. She tried to talk to her surgeon at the time about getting the other breast removed and he just told her he didn't see any medical reason to do so. Flat told her that and at the time she didn't have a Medicare supplement that would have paid.  She struggled for a year feeling lopsided and uncomfortable, hating prosthesis that didn't match the other breast, and fearing cancer returning in the other breast.  She got a Medicare supplement and persisted and thank God her regular physician wrote a letter saying removing the other breast was a medical necessity.  She had the breast removed (she had had a mammogram that February and this was October) and the path report came back with the shocking result that she had HER2+ breast cancer in that breast.

 I had struggled with lumps and fibrocystic diseas since I was 20 and I was tired of living in terror of my breasts.  I and my wonderful surgeon concurred that a double mastectomy was what I needed to do.  I have never regretted that.  I'm older and always have been a bit of a tombody so I don't miss them because I always lived in fear of them anyway.  I just didn't get reconstruction.  But I know from my Mom's experience how uncomfortable she was with just one breast.

 I wish you the best with your decision, but just remember - it's your decision.   Oftentimes doctors just don't understand what you're going through and to me you sound pretty sure of what you feel you need.  I don't know your background, but you do.  I'd go for another opinion.  Take care.

I am considering this also.   I had a single mast in '08; and did have to have chemo and rads ; I will have exchange next year (2010) Between now and then I will decide, but am leaning towared addressing the other breast at the time.  Even though my calcifications are minor in that breast, I want to minimize the risk and never have to have that type of treatment again - my doctor feels recurrance is the bigger concern; not the other breast; but I am seriously thinking about it - -

looking forward4more - was your MD in favor or did you have to push for it?  

The decision is very difficult yet very personal.  I lost 2 sisters to brst ca 1997 and 1998, extensive family history on only father's side-parents, 2 uncles, lost to ca, aunt and cousin both with prophl. mast.  I was told to have reduction for back but after careful discussion with all my doctors and their support I had it done 121908.  All my sisters' and my tests- needle biopsy, MRI, mammogram- all negative.  The surgery revealed benign nodules- wait. . .  I was told there were none. . . many times. . . just decided personally I wanted to have  "some" control.  I applaud those who have underwent surgery, chemo, rad., as it was difficult enough after assurance from doctors (oncologist, PS) that it is much more difficult road with a positive DX and treatments to endure.  It was a different mindset to choose to lose my breasts rather than no choice (may not make sense)  I have no regrets even though having trouble with too large of size/capsule.  As a nurse of 22 years, taken care of many cancer pts. I am just thankful each day I have with my family and friends.  I am still no longer exempt from all cancer forms but yet at peace-more so than in the past.  Daily family dinner prayers include all those with cancer and their families.  Good luck!!   Connie