contralateral prophylactice mastectomy 2 years later

ally2

Hello friends,

I had bc in fall of 07 - this site was invaluable, although I didn't post a lot. Had a mastectomy and hormone therapy and continue to take tamox. Now I'm thinking about recon again, and in turn, am thinking about removing the other breast - just so tired of waiting for the other shoe to drop and tired of my appearance. I'm getting the genetic testing done - lots of prostate cancer on dad's side - but it will probably be neg.

Anyone out there with a similar situation? All my mammos and MRIs have been fine, but I just started thinking about all that cancer and my age (35 at diagnosis) and my desire for a symetrical reconstruction. Just looking for some encouragement. The docs would support anything - but they don't really say that they prefer this over the watchful waiting.

 I'm really struggling but 90% of the time I think it is the right thing. Just looking for any support you could give! Did anyone wait two years, then have the other one off?

Thanks to all.

ally

Daudine

Hello Ally,

I encourage you to go ahead with the surgery. I have no cancer but I'm BRCA1 positive and lots of cancer in the family. I had a prophylactic bilateral mastectomy and a ovariectomy last year (37 years old).

I know the stress that you are living. I don't regret a thing even if the ride was tough.

Good reflexion!

Texas357

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.

ally2

Thanks for your responses. My IDC had characteristics that are predictive factors in a contralateral breast cancer (intermediate to high grade, and multifocal, though they were all tiny) so I don't know what I'm waiting for. It is just weird to elect to have surgery, I guess, and I know with reconstruction I'll be in for at least one more surgery... but to have it all almost completely behind me, no more mammos, mri, would be so great. I've read that it doesn't change survival rates, but I just don't want to go through any of it again.

Texas, just curious - did you need more time to decide, or did the docs not want to do a bilateral at that time?

Thanks for the support!

ally

Carmelle

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.

2frogs1princess

I waited two years. I felt exactly the same way as you.....tired of wondering if and when the other shoe would drop, AND wanted "a matching set" ) I was 30 when I was diagnosed and had breastfed two children. I had one standing at attention and the other not paying attention! I had the BRCA testing done (no family hx but why does a 30 yr old get breast cancer?) and it was negative. My doctor supported my decision and I went with it. That was 1 and 1/2 years ago and not one minute have I regretted my decision. It was more surgery, but now I'm done with ALL of it! Good luck to you, it is a big decision to make, but you will make the right one. Take care.

Texas357

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.

Beesie

Ally,

Lots of women have done what you are thinking of doing.  Some women are comfortable living with the risk of another BC while others feel that they are waiting for the other shoe to drop. I fall in the first camp; if you fall in the second, then having a prophylactic mastectomy might be the right thing to do.

There is one comment that I want to make however.  Having a bilateral is absolutely not a guarantee of symmetry.  Plastic surgeons can do a lot to achieve symmetry between one natural breast and one reconstructed breast so many of us who have a single mastectomy & reconstruction do have very good symmetry.  When you have a bilateral, although the reconstruction is being done on both sides at the same time, each side is a separate breast that is being built and how your body reacts might be quite different on one side vs. the other.  The skin or muscle on one side might be tighter than on the other side, affecting the appearance.  One side might drop more than the other side.  Your chest shape might be different on one side vs. the other, resulting in a difference in how the implant sits.  If you feel that having a prophylactic mastectomy is the right thing for you to do in order to get peace of mind, then do it.  But don't put much weight on symmetry as being a reason for doing this - symmetry can be achieved with a single mastectomy and it often isn't achieved with a bilateral.

Deirdre1

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!!!

english

Exactly!  I had a bilat and recon immed., and my two "new" breasts are far from sym.  My PS is excellent, but mother nature will always win.  However, I too did not want just the one affected breast to be removed because I did not want the worry over the other one, so opted for a bilat.  A friend who has just the one, without recon, states she wishes she had had a bilat as the worry is not worth it.Hope this helps and good luck.  Go with your gut.

ally2

Thank you all so much for your responses, your honesty, your support. I've just about maxed out my friendships talking about this with people who haven't been through it. Even blurted out to my accountant (male) what I was thinking about doing! Counseling is definitely in order...

Interesting that symmetry is not a guarantee. I didn't realize that. You hear "better result" but I guess that doesn't mean perfectly symmetrical. In doing the unilateral recon, the PS would want to alter my remaining breast and I'm really not comfortable with that idea. So I feel it is all or nothing with the recon but maybe I could re-think that.

There was a big article in the paper's health section a few days ago about this very issue. They seem mostly to talk about the BRCA positives. I await my results of that test and will continue to debate. Thank you all. More comments welcome!

Ally

ddlatt

i am much older than you (54) and had a double mastectomy in november 2009. my birth mother and grandmother both had breast cancer and died when it spread to their bones. i will have the BRCA test done later this year. just to throw in my two cents, i am so relieved to have made the decision i did about double mastectomy. i had the option of lumpectomy but wanted to reduce my chances of recurrence as low as possible. i am so happy about no more mammograms and no more worry waiting for the results of the mammograms, which has plagued me every year since i had my first mammogram at age 40. i've always wanted a flat chest, so that's an added perk.  best of luck with your decision.

casalee

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.

lilith

Ally, many doctors actually support this rather than just watching. 

I had my BRCA test coming up positive, and I never had a doubt about what I was going to do... the genetic oncologist was VERY positive about doing a bilateral. He also mentioned that being young (43 at dx) I was doing the very best in order to live still a long life. Gosh how I liked that guy being positive! that was great to hear. 

Also - hey, the recon is symmetric and pretty good. That is much more difficult to obtain when the recon is done only on one side... ) that is definitely a plus.  My new breasts are as much a part of me as my previous one, they are better looking than before, and I don't miss anything. I just hope it will keep going a long time.

CAZ

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)

Mykidsmom

Carol - I didn't realize that lifting a heavy object can cause capsular contraction. It that the case forever? Do we always need to be careful about lifting after the exchange? I hope you are doing well post - surgery. Take care. - Jean

CAZ

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)

Mykidsmom

Carol - Yup, I am off to pre admin testing right now. My surgery is Thursday. Take care. - Jean

Kelly2002

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

Kelly2002

My birth mom and gram died of BC my mom at like 44 I found a lump and they removed B9 now i have bloody discharge only from that breast and its been almost a month!! I have 2 non palable lumps on same breast. I had dry cracked itchy nipples before the lump removal had my period 3 time in a month in half. Theyre ganna test me for the gene, do u have any info how long did the test results take and so forth any info will help Thank u you can email me if you may twinklez4ever@aol.com   

Minnesota

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

Carolina59

I was 48 when diagnosed with DCIS and high grade, multifocal, multicentric IDC in my right breast. During the weeks between my initial diagnosis (core needle biopsy) and my surgery, I was sent for multiple tests, including PET/CT and breast MRI. The breast MRI picked up two suspicious areas in my left breast.  I was sent back for a targeted ultrasound which revealed nothing. Then sent for MRI-guided biopsy. One site revealed cancer, the other was benign. My breast surgeon said these were two primary cancers (L and R breasts) and recommended bilateral mastectomy, which is what I did. The path report on the left breast revealed numerous areas of DCIS that were not picked up by mammo, u/s or MRI. I made the right choice to have the bilat. w/immediate reconstruction (implants).

I also did genetic testing which came back neg for BRCA1, and a variant of uncertain significance in BRCA2. My paternal GM died of metastatic BC, and my paternal 1st cousin was diagnosed at 43. She had a bilat and chemo and is 18 years NED. My ovarian onc. recommended oophorectomy. I have a child and can't have anymore children, so I opted to have my ovaries out.

I had a great PS, but have had 2 subsequent surgeries on one side to try to get symmetry (I think we've got it now). All that said, I still miss my breasts--at some times more than others, and more lately. Maybe it's because I'm coming up on my 2 yr. anniversary of diagnosis/surgery.

Overall I feel that I pursued the most aggressive surgery and tx possible (except rads, which weren't recommended) to prevent recurrence. My dd was just over 2 years old when I was diagnosed, and I was terrified that I wouldn't live to see her past childhood. I feel more confident now, but I still have my days of worry and dread.

 Good luck with your decision.

alicia57

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.

lookingforward4more

I had multi-focal cancer in my right breast and had a single mastectomy in 07 with a tissue expander. Unfortunately I had to have chemo and rads. I then decided that I NEVER wanted to go down that road again if I could help it so when I had my expander switched for an implant I had a prophylactic mastectomy on the left (skin sparing) with immediate implant. They don't match perfectly but they look pretty good and are perky. I don't have to wear a bra and I have a d cup. Its really not so bad. I do miss my nipples though. But what a relief to no have to go through the horror of mri's and mammos. They missed my cancer for a few years after saying my calcifications were 'benign" so I don't trust them anyway! Good luck with your decision

Keryl

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?  

lookingforward4more

Keryl, all my doctors (surgeon, plastic, radiologist) EXCEPT my oncologist were supportive. My oncologist said "why would you want to cut off a healthy breast?". I told her its obvious she has never had breast cancer! I really struggled with it because my nipples were very important to me for sexual reasons but having been burned by a really poor breast surgeon who told me for years that I was fine when I was not, I just did not want to worry all the time. Yes, I have to worry about recurrance...but at least I can cross off mammos and mri drama. They did a sentinal node biopsy on my "good" side and it was negative. They also checked the breast in pathology and it was, in fact, healthy. Its such a hard decision!

mythreesons

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