Considering prophylactic masectomy

If I had LCIS or DCIS and a strong family history, I'd definitely get BMX.  I have ADH right now in multiple locations, and know some day I may also face this choice.  Best wishes with your decision!

Hi Sherri.  Completely different history than you (Stage III IDC/DCIS/LCIS), but I think I understand your question.  At the time of my BMX, I thought one side was prophylactic.

Some downsides:

1) Surgical risks, including infection.  Mine was smooth sailing but a friend had terrible problems with her incision (and had not yet had chemo).

2) It's possible to get either or both chronic pain syndromes and lymphedema from mastectomy alone.  The lymphedema risk is much higher with lymph node dissection, but not asolute zero. 

3) Once it's done, it's done.  You can't reconsider.

4) Even a good reconstruction won't give you a sensate nipple, and it's possible fairly large areas of your chest will be numb.  On my prophlactic side, it's about one inch below to close to two inches above my incision, but from what I hear it varies a lot. 

While it's true that PBMX doesn't remove all breast tissue, it's not true that you have the same risk of developing breast CA.  The risk doesn't go down to absolute zero, but it drops a lot, and I wanted that risk as low as possible.  But the main reason I wanted a BMX at the time of my surgery was very similar to what Shabby has expressed.  I did not feel like I could stand the process of going through scans, biopsies, waiting and all that fear over and over the rest of my life, waiting for what next new thing was lurking. Also - this sounds so superficial - I knew I would never want reconstruction and I wanted to be symmetrical.  I am.  My partner at the time didn't understand it, but she does now.  I miss my breasts, but I don't feel less than whole.  I just have a different body.  

For me, there was a strong gut feeling about what I should do and I have not regretted it.  I suspect going against my gut would have wreaked havoc with me emotionally.

You might check out some of the posts by women considering lumpectomy vs. mastectomy.  It's different, but some of the pro's/con's are really similar.  

I wish you luck whatever you decide to do and good support in your decision. 

Hi Sherri.  Like you, I wrestled with this question just about a year ago.  After an excisional biopsy, I was diagnosed with LCIS, ADH, and ALH.  I met with a Surgical Oncologist, a Medical Oncologist, my Breast Surgeon, and a Plastic Surgeon. I do not have a strong family history for breast cancer, but my biopsy results put me in the high risk group.  The Oncologists recommended Tamoxifen, and close observation with MRI's and Mammograms, alternating every 6 months.  After having gone through the wire guided biopsy, the excisional biopsy, and an MRI, I realized that all of the testing was not the way I wanted to live my life.  I am not a worrior, but the frequent reminder of a cancer that could be lurking or develop was not the way I wanted to go forward.  So, last September, I had a prophylactic bilateral mastectomy with immediate tram flap reconstruction.  I woke up in the recovery room relieved that the surgery was finally over, and happy that I had significantly reduced my chances of developing breast cancer.  If given the decision again, I would have the surgery  in a heartbeat. 

This is a choice that is difficult, and every woman faced with it must choose what is best for her. After I decided to have the PBMX, my gynecologist and my breast surgeon, both females, said that they would have done the same thing given my bx results,  I wish you well, and hope you find peace in whatever choice you make. 

I have a strong family history of breast cancer, even though I test negative for BRCA's.  I had a bmx with nipple sparing diep, one side being prophylactic - or so I thought. Pathology results showed that my prophy side was not prophy after all, with DCIS there as well.  For me it was a gut decision after reading through all my options and gaining understanding through these lines.  I was amazed to be able to do a nipple sparing bmx and diep recon all at once. I went in with breasts, came out with breasts.  My nipples are responsive, but have no sensation.  They look very good, as do the breasts.  I was told the determiner for nipple sparing is location of the spot being more than 4 cm from the nipple, and the type of cancer involved. For me, I really could not mentally/emotionally manage the constant supervision needed, so bmx felt right for me. Some have felt this was going too far, but it was just right for me.

Hi Sherri, I am about to turn 54 and had my PBMX in August 2010.  I had had abnormal mammogram results for the two and a half years prior to that (ADH and LCIS) and also quite a strong family history.   The day the genetic doctor handed me the leaflet about prophylactic mastectomy (to my surprise as I had not considered it or even know I would be eligible) I knew I would do it.  They made me wait a year for it which I found quite hard as I did not know if would develop full flown cancer during that time or not.  As it turned out when they did the pathology of my breast tissue they found some very small abounts of DCIS.  My chance of developing cancer had been assessed at more than 40 per cent so it was really a no brainer to decide to go ahead.

I am in Australia and if you meet the criteria you can have the BMX on Medicare, that is you do not pay anything. This goes for the reconstruction too.  For me it was an easy decision to make.  It's not that I particularly wanted to lose my boobs.  It's just that there seemed no sensible alternative.  I was back at work after two weeks.  I didn't find it too hard but I didn't feel really okay for two months afterwards - in retrospect such a short time although at the time I did wonder whether I would ever feel normal again.  In Feb this year I got my Mentor gummy implants, quite small ones it seems when I look at the reconstruction boards here, but I am happy with them and most of the time I just forget about them.  This is such a personal decision but things change in life all the time and we adjust.  Now I'm not fearful or apprehensive about breast exams as my risk is very low.  Please ask any questions you like and I will try to answer them or at least give you my perspective. 

BRCA negative here with a significant family history and almost 2 yrs.out from my NSM with implants. The safety measures for nipple sparing are well documented for qualified candidates, i feel, having done tons of research myself. Happy over the moon with my new risk reduced amazing breasts and no more fears, no more imaging, no more biopsies...this is priceless. Very personal decisions with no right or wrong answers. Take your time, gather all the facts & seek opinions to make a fully informed decision best for U !!

Just weighing in that I too chose pbmx/recon (diep), I did not keep nipples. BRCA negative, but family history is mom-her sisters-their mother-her mother, all pre-menopausal, and only my mother survived.

At age 57 I thought the family disease had somehow skipped me, until biopsies found LCIS in three places, including right under the nipple in both breasts. After looking over my shoulder for BC for more than 40 years, I took that finding as an early warning signal and had my surgery last July. My path was clear, so I feel that I got it before it got me.

The cosmetic results are astonishing and I am very glad I took this route, which was the right one for me but of course, may not feel right to others in similar circumstances. My decision was both easy and quick, but I think I had been 'deciding' for decades as I rehearsed in my head how I might respond to what I always imagined was a near-certain BC diagnosis. (Stats and logic have a hard time trumping family history that unfolds before your eyes!)

Best wishes to everyone who is researching and soul-searching over how to respond to any high-risk finding.

Carol

I had several biopsies with atypical hyperplasia and very diffuse papillomatosis which made it very hard to follow with any kind of testing. The leaky nipples were gross due to papillomas and they told me they could never get rid of it all. With the atypical metplasia changes and ducal hyperplasia I told my BS who is also my GP to take them off. DH and I had 2 one hour conferences with her before she would consent and fortunately the insurance paid. I am relieved to have had it behind me and also to have had a great PS with good outcome. Not a walk in the park, but gave me so much peace of mind. I had chest X-ray and ultrasound at 2 years which BS coded as BC so no insurance problems and everything was fine. I don't dread BC any more because I got it before it got me and even BS says I made right decision. Good luck with your decision how ever you make it.

I also have had no children and am overweight (both risk factors) and was 57 when I had my BMX.

I had a PBMX aged 44 after my sister, aunt and uncle died from stage IV metastic breast cancer. I had ALH and I had support from 4 doctors. I wanted to greatly reduce my risk of BC, as did my sister who was dying of BC at the time I made my decision. It was right for me. I'm sure you will find the best decision for yourself.

Amy Lynn

LisaMG and I are "old friends" .. Here's my "story"...

Ashkenazi Jew, My mom and 5 of her siblings had/ passed from cancer. 4 breast, 1 osteosarcoma, 1 lung.

I had three brothers ,one deceased from lung ca., 1stsge 2 colon cancer , 1 melanoma, ... My Nephew melanoma..

I tested BRCA- in 2002 , diagnosed stage 2B Bc in 2004 had Mom tested as she was 24 hours away from passing  ( metastatic BC) she was negative..

We are considered a "mystery family" and since my remaining survivor aunt is elderly and I've tried for years to get her tested ..

Unfortunately 10 years ago if you tested BRCA- no one took your family history seriously and it bit me in the*ss, big time! Thanks to people like Lisa and myself making noise... and lots of it .. those who have significant family history's and are "high risk" are hopefully given better and thorough screening and followup.



Be vigilant.. I did the best I could do with the then current thinking... THEY were WRONG , my risk was NOT that of the "general population",obviously!

My concern is now for my daughters future,

Warmly,

Marcia

Carol,

I'm glad you've "burst" her "bubble! It's critically important that she remain "vigilant" and push as hard as she can to have her concerns/ family history taken seriously.i had two prior biopsies and was told by my PS in 2001 that I "should have prophylactic mastectomy", and that he'd write "cancer phobia" on the paperwork that insurer would request for justification. I was not willing to have such "labeling" placed into what would be my permanent medical history ( we all know what such information can do in the wrong hand)! I elected to screen at 6 month intervals although I was not "allowed" to have MRI as this was "only" for the BRCA +. IF Id have been permitted to have one in 2003 my Stage 2B diagnosis might have been an earlier stage..



Best wishes to all to advocate with passion for themselves and their loved ones!



Marcia

Hi all, this thread is really helpful for me and I have a follow up question. For those of you who are BRACA negative, but with a very strong family history (like me), do you have thoughts or know of research regarding our risks for ovarian cancer? It's been stated by many here that women like us must have some sort of mutation that has not been identified yet by the scientific community.... If BRACA positive leads to increase risk of ovarian cancer, what about us? Do any of you consider proph ovarian removal? What have your oncs said about this? Thanks!!

Esmerelda... My dad and grandfather had prostate cancer (another hormonal cancer) and I considered the oofrectomy but have decided to wait. The side effects from a oofrectomy can include bone loss, dry skin, blah blah... so I have decided to get yearly US of ovaries, nad wait for a bit... maybe 5 years and then I might do it in my mid 50s.

I had a bilateral mastectomy and reconstruction 2 weeks ago.  My doctor strongly suggested a lumpectomy and radiation. Going against her advice was very hard for me.  It is not in my personality to not follow doctor's orders, but after agonizing over my decision, I decided to go with my gut.   My mother  has survived breast cancer twice and my brother had pancreatic cancer.  I had fibrocystic, dense  breasts and found lumps all the time.  I knew it would drive me crazy if I only had the lumpectomy.  I was not crazy about having radiation either.  I thought I would have the surgery and that would be the end of the worry.  Unfortunately, it was also in my lymph nodes and now I have to have chemo and radiation.  Another doctor told me that there was no medical reason for the mastectomies and that it was an emotional decision.  I totally agreed with him.  It was purely emotional, but I'm still glad I did it.  Good luck.  If you're anything like me, you will find some peace once you decide, whatever you en up deciding.  The questioning yourself is so painful.