How many did non-cancer breast as prophylactic?

dlcw

Hi All - looking for some advice/experiences.  I am nearing the end of the trial I'm doing and preparing for my first surgery in May.  I've been talking with the surgeons (general and recon) and indicated I wanted to do a double MX - totally fear driven I'll admit as I know I am a worrier and every little think I might feel in the remaining real breast would send me into a tailspin I'm sure.

  My oncologist talked with me yesterday about maybe reconsidering that....she said most of her patients come back after a double with recon and tell her it was WAY more surgery and recovery than they had envisioned and had some second thoughts (if they could do it over again which they can't).  She also indicated that, while rare, complications from surgery can be a huge issue and I would be doubling the places in which I could get complications....she also said that it's completely my call and they will support whatever I choose.  Finally, she said the trend they're seeing (this is at the Stanford Breast Clinic) is that more and more patients ARE opting for the double with one side prophylactic.  I am negative for the BRCA defects.

 So, what did you guys do?  Do you regret it?  For those of you that kept the natural non-cancer breast, do you think you worry more?  For those of you that did both, was the surgery as bad as you feared, or worse?  Would you do it again?  I am just really conflicted and I know I have to make my own decision but I'd love to hear from people who have the perspective of being on the other side of that decision and what they think now looking back.

 Thanks for anything you can share.

dlcw

chinablue

I did not have an mx as prophylactic.  I figured that I was not BRCA positive and no one in my family has gotten bc. My onc said that if bc was to recur it could come back anywhere in my body, not necessarily in my other breast.   

elmcity69

hi, I am not triple negative, and do have the BRCA gene, so I did the preventive MX last week.i had my original MX 10/09; sometimes i regretted not doing the bilateral MX, but frankly, i was so shell shocked at diagnosis i focused on the unilateral. I had chemo/rads/various surgeries inbetween the MXs, so it was easier this time around (read: no lymph node dissection,yay!)

I know many women who did the bilateral with recon - they are happy they "got it over with", as they usually phrase it. the drains are a pain, but by one week out, most are gone. I did immediate reconstruction and am so happy i did. less surgery, less hassle (did a latissimus dorsi flap)

 i breathe easier already; but lacking the BRCA gene is a whole different scenario. I am not advising either way, just offering my experience. Good luck with your decision making.

hugs

j

poptart

dlcw,

How old are you?  If you are on the younger end of bc (under 50/pre-menopausal), I would consider a bilateral mx.  The bilateral mastectomy is not to avoid a recurrence of the origianl cancer, it is to prevent a new primary.  I am pretty sure that once you have been diagnosed with bc, you are at greater risk for a new primary bc.  I had early idc triple negative in one breast and hormone positive dcis (undetectable) in the other.  I know most people do not have problems with both breasts, but if you are youngish, I would think about it in the long term.  By the way, I am also BRCA negative, but I do have bc in my family.

dlcw

I am 47 and premenopausal.  My oncologist did suggest that having my ovaries removed would reduce my life-time risk for a new non-triple negative cancer as when I began chemo I had no signs of early memopause so could have some time left before I get there naturally.  Apparently the ovary removal is laproscopic so not so bad?

chinablue my oncologist said the same thing - if my TNBC comes back it won't be in the other breast, it will be lungs/liver/brain or bones....

I have been looking for studies that talk about the rate of recurrence (new primary tumor) in the other breast which is what i am worried about - I sort of feel like I lost that lottery once already and i certainly don't want to lose it again in a few years....

thanks,

dlcw

Snobird

I did BMX/DIEP after a local recurrance. I am not BRACA 1 or2. I can't be happier. Yes its a big surgery but doable if you are healthy otherwise. After the surgery they found atypical cell issues in the uneffected breast that were pre-cancer. I just felt it was a time bomb ready to go off and I wanted to be done with BC. There are many threads here that discuss this issue just look under Breast Cancer Reconstruction and you will see other threads worth checkin into. I have no regrets other than I wished I'd known about the DIEP the first time around. I could have avoided radiation.

Suze35

I did a prophylactic MX on my right side, and am glad I did. I had LCIS in the "good" breast that I didn't know about.



I'm 41, and very premenopausal. I recovered very well from the surgery. I literally stopped all pain meds, even OTC, within 24 hours of surgery, had my drains out in a week, and have had no problems with fluid buildup. Honestly, the non-lymph node side was noticeably easier to deal with, any discomfort I had was on the node side.



It is a personal decision, but I have no regrets. While it is true that TN usually comes back as metastatic BC, taking the other breast greatly reduced my chances of another primary occurrence, which also concerned me.

poptart

"My oncologist did suggest that having my ovaries removed would reduce my life-time risk for a new non-triple negative cancer"

That is interesting.  I am assuming your oncologist didn't suggest (I mean recommend) this, but just mentionned it? It would seem odd to suggest ovary removal instead of a propylactic mastectomy, unless you have a risk for ovarian cancer.  I think overall there are benefits to keeping the ovaries as we age that wouldn't apply to having a breast.  I hope this makes sense.  I believe ovaries, even post-menopausally, provide some benefits to heart health and other things.  I am not sure that breasts do the same

I love not having breasts - I have fake ones and love them just because they're fake!

Suze35

Poptart - my doctor flat out told me no to removing my ovaries. She said the risk of serious health problems from early menopause was too great, and I had slight ER+ at 3%. So there are definite reasons to keep them if you can.

dlcw

Suze 35 and poptart - my oncologist mentioned ovary removal completely in the contest of reducing the number of years i'd be exposed to the hormones that can cause a new primary hormone-positive tumor in the remaining breast.  SHe was not actively advocating for it, just acknowledging that if there was any benefit it would be that.  She didnt mention that there were other health issues associated with early menopause but I will definitely bring that up at my next visit. 

I have time to make a final decision - I plan to have mx on the cancer side on 5/9 when the trial I'm in is done, then, adjuvant chemo based on pathology from the trial, then radiation (I had 4 nodes), then I will follow up with the plastics guy about how long to heal from radiation before he will be ready to do the DIEP.  That will give me time to really think (agonize) over the decision.  My initial plan, and what just feels like what i want to do, is a double.  I also did some reading on the Breast Recon forum and I didn't see many people saying that the regretted doing a double with one side prophylactic - some even indicated calcifications and small dcis were found in the 'prophylactic' breast so it clearly was the way to go for them.

thanks for all the info guys -there's nothing like hearing from people who've been there!

dlcw

poptart

"the plastics guy"

Ha ha! 

Awaywego

I did a double MX and discovered after the surgery that my left non-cancerous breast did in fact have DCIS. The diagnostic mammogram and MRI did not see the DCIS on the left side prior to surgery. I have dense breast tissue so my choice was based on the fact that I wouldn't have a whole lot of confidence that they would catch future cancer on the left side. In fact, they had trouble seeing the lump I found on the right side! Also, my decision was influenced by my Mom who had a bilateral and then required another MX on the other side (2 surgeries 6 months apart). I am happy with my choice an don't have regrets. The surgery was doable with a few unpleasant days after surgery but the rest of recovery was quick.

I am BRCA negative and was not advised at anytime to remove my ovaries. I am in my early 40s and have already experienced thinning of my bones due to chemopause, steriods and chemotherapy.  I was happy to pop out of chemopause and resume my monthly cycle as I feel my ovarian function will better serve my long term bone and heart health.

I'm glad you have some time to make a decision. There is a lot of information to consider but you will do what is best for you. Good luck!

Mantra

I had a prophylactic mastectomy a year ago. Although I wish I never had the cancer in the first place that caused me to lose my first breast, I have never regretted choosing to have my "healthy breast" removed. They did not find cancer in my healthy breast but what they did find greatly increased my chances of getting cancer in that breast as well.

For me, the thing that weighted my decision the most was the ER/PR negative. I was fortunate that my cancer was DCIS, albeit very aggressive. I just didn't want to gamble with the unknown. I had already had pre cervical cancer and a pre cancerous polyp in my colon and I strongly felt that if I didn't have the PMX, I would find myself in the same, or worse position again.

It's a tough decision. I vacillated for many many months. All I can say is that when I finally made the decision, I never looked back. After vacillating for so long, I just woke up one day and I knew the answer. And from that moment on, I kept moving in a forward motion.

minxie

Like you I am a major worrier. When it came time, I decided to have a MX of both the healthy and the bad breast, because I knew I could not deal with the anxiety of mammos every 6 months, more biopsies, ultrasounds, MRIs...

Your doctor is right, it's a heck of a surgery - I had reconstruction as well, and I'm sure it's why I've had so much lingering pain, which I was not prepared for. But I do not regret it for a minute. I am BRCA negative, 44, with two young children I want to be around for.To me, it was not a big deal losing my breasts as I already felt like they were the enemy.

Best of luck with your decision!

anonymice

I have decided to have my other breast removed prophylactically.   My reasons are several - I'm 45 so a new primary is a real risk in my hopefully 30 yrs or more left on the planet; I have large breasts and symmetry would be very very hard, and I just frankly don't want breasts, at least for a while.  I am dreaming of a day of no upper backaches or TMJ!  I'm not getting any immediate reconstruction because of my dx, so that's just as well!!!

But mostly, I am doing it because, obviously, breast tissue is the most sensitive tissue to cancer on a woman's body.  I want all breast tissue that I can have removed, removed from my body.  Any little stat point works for me.

So, those are my reasons...good luck with your decision! 

Luah

I too am a worrier. But to be honest, what worries me most about trip neg is distant recurrence (mets) and no surgery will erase that risk.

As you are not BRCA+, what does your onc say is your lifetime risk of a new primary in other breast? How elevated compared with average woman on the street? Given the sophistication of scans, is that something you could live with or not?  How would you feel losing both breasts?  Hope you can find some answers.

smco

Hi - I opted for bi-lateral MX, as I had ILC and there is a greater risk of cancer showing up in the "good" breast with ILC.  Also, the MRI of the non-cancer breast showed "areas of concern".  Turns out my left breast was cancer-free.  BUT I absolutely have NO regrets.  I would have worried like crazy and trying to do the matching with recon would have been tough.  And, more importantly, if my "good" breast needed removing later on, then a second surgery is far more risk than the one, bilat MX.  And honestly, the pain and recovery time was very doable and I really don't think it would have been that much different if I had opted for only a unilateral. 

LuvRVing

I am having a BMX with tissue expanders on Monday.  The right side is a prophy.  I can't have DIEP, not enough abdominal fat to make even B cups, so I am going the the TE route.  I am 60, and while this won't prevent a distant recurrence, I am already tired of the worry just within the breasts.  So off they come. 

Michelle

mouse51

I'm not triple-neg nor do I have the BRCA gene.  I had a MX in 3/2010 and a few months later decided to have a prophylactic MX on the other side.  My BS was very supportive - with fibrocystic breasts I had more cysts than healthy tissue, and BS felt it would be challenging to diagnose early if I had a new primary on the other side.  My BS also prefers to do prophylactic MX's as a later separate surgery.  His goal is to have his patients cancer-free as soon as possible, but with BMX he sometimes sees a delay in treatment because of complications from surgery on the non-cancer side.  In fact, that was the case with me.  With my prophylactic MX, I had a longer recovery due to fluid build-up.  I am glad I had the proph MX - I didn't see the sense in having the 6 month mammograms & MRIs, waiting for a new primary to appear & hoping to catch it early, not to mention all of the worrying that goes along with it.  I opted for TE's and recently had my exchange surgery. 

Chocolaterocks

hi I had both removed

ILc is very sneaky and its like carbon monoxide gas- you do not know its there until its late in the game.  It also contralateral. I found all the testing horrible- stereo, exicionals, multiple multiple mammos... the fear...

so I thought this way  maybe I could move on- its almost 10 weeks, went back to work at 4 weeks, done with pt, still reviewing tamox but moving on..

Its an individual decision- good luck.

chocolate

vmudrow

I didn't have cancer or the gene but ALH and strong family history.  I decided to do double MX, because I am a constant worrier.  Nothing else was found, but still happy with my decision.  The surgery for me was not bad, no complications, not that painful etc.  Good luck with you decision.

lml0361

DLCW Thank you so much for posting this.  I am triple negatve and do not have my BRAC results.  Currently undergoing chemotherapy (TAC) then will be making the surgery decision.  Thus far I haven't put too much thought as I was focusing my energy on the chemo.  I have seen a surgen for an initial diagnosis and scheduling to see him again soon.  I have always said I want BMX because I too am a worrier and had a clear mammogram 4/10 and diagnosed 12/10 with IDC stage IIIb 8cm mass that I found during an exam. 

This is a very personal choice and the best choice is an informed one that the patient/doctor make together.  This discussion has helped me hear from the people versus just the books and has confirmed I should push for the BMX.  Thank you all for your input to DLCW.

Meggy

I sure did.  I didn't want this thing coming back after me.  Also, I really feel that we don't know how much cancer we have till they take the breast.  I know that is a terrible thing to say but that was true for me.  Shortyly after I strated neoadjuvent chemo, the ultra sound called a second tumor in me...never even had a chance to get it biopsied...my oncologist was away and the chemo wiped it out so quickly (thank God).  Made me realize that there can be more tumors than you even know are there.  Sometimes when sisters write of a new primary, I wonder...was it always there but the doctors just didn't know about it.  Maybe if my kids weren't so young...no....I would have done it no matter what.  Cancer just sucks too much. 

dlcw

Thank so much everyone - I think I am leaning towards doing both - that was my thought from the start and I know I will worry obsessively about every lump I might find.  Plus, it doesn't seem like there are many of you with regrets about doing a double with one prophylactic.  I have a friend that had a double MX yesterday (she is BRCA1+) and I'm going to visit with her and get all the gory details so I'll be really prepared (as much as possible) for what's ahead.

Thanks again,

dlcw

KSkier

Worrying and that aside, I opted for bilateral for perfectly practical reasons: having just one boob would require that I wear a prosthesis even when not practical.  I'm very active - did I really want to carry my own plus a fake around in my running bra? No way.  I've been boobless for 2+ years and it's just the way I am.  At the beach, at work, at home.  I was told that reconstruction, if desired, would have to be delayed, and I didn't want to go around with just one.  I thought that would be just too wierd.  It was all or nothing for me.  And I've got to admit, running on the beach in just my suit after years of trying to strap in my C-D cups was quite liberating!

certified

So glad you started this thread.  I was going to ask exactly the same thing.  After reading all the replies I will opt for the BMX also.  This way no worry and I'll be balanced.  I don't wear a bra at home anyway.  BTW I'm 64.  I'll be doing this alone except for the first 2 nights.

sespebadger

I had BMX no recon July 2010 and the surgery and recovery was a breeze. One breast was prophylactic.  I'm BRCA negative, but my Mom got b.c. at age 60 and then again in the other side at age 62. Once is enough for me, thank you. I was 49 at diagnosis, pre-men. and had densce breasts. It scared me that I was diagnosed at stage 3 with yearly mammograms. Seemed to me like they couldn't see anything in my dense breasts. Now that I am done with treatment I am so glad I no longer have to have mammograms. I just have blood tests. I also can easily do self-exams. Great peace of mind. And I wear microbead lightweight forms and they are easy and look great.