Prevention: Tamoxifen vs. Mast's

zengardnz

Please give me any guidance that you can.  I am high risk for BC due to mother/sister having bc (after menopause) and being diagnosed with ADH in both breasts (very slight in one).  My breasts are very hard to monitor in that MRI's showed up all sorts of activity, mammograms and a BSGI showed nothing, a PEM showed a "hot spot" in a breast which was mostly clear on an MRI but showed no activity in a breast where the MRI showed all sorts of spots.  After multiple tests and biopsies over the past 7 months, there has been no diagnosis of bc.  But, due to family history and personal breast issues, I do have an increased risk and it's at 11.5% of having bc in the next 5 years per the Gail study.  Genetic counseling indicated not a real high risk and I am currently waiting to see if my insurance company will pay for genetic testing.

 In the meantime, I'm trying to decide whether to have bilateral prophylactic mastectomies (BPM) or to go on Tamoxifen and do testing every six months.  If I do MRI's every six months, I would show up so many false positives that my breast would wind up being swiss cheese due to so many biopsies so my surgeon/radiologist have stated that I could do mammograms every 6 months and alternate between MRI's and some sort of nuclear medicine test (either PEM or BSGI) each 6 months as well.

 In the meantime, I'm trying to get in to see some oncologists to see what they think.  I'd like to keep my breasts and it would be really awful timing to go through surgery right now since my home is on the market and my career/income has gone to pot (mortgage broker) but I also don't want to be fool-hardy either.  My surgeon said that the Tamoxifen would reduce my chances of getting bc by 85% but online, it sounds like it is more like a 50% reduction.

Any ideas or opinions about what I should do or what I should consider in making my decision?

Anonymous

zengardnz,

If you decide to take Tamoxifen, and do the frequent screening that the surgeon/radiologist is recommending, you can always at some point in the future decide that you want the BPM.  This is not an emergency situation, and you have time.

Right now, it sounds like you are not quite ready for that big irreversible step.  In the future, the housing market will come back, your job will become more stable again, you will get settled in a new home, and as long as you keep on top of the screenings, you shouldn't miss anything. 

When/if at some time in the future you are ready, you will know it.  You can decide at any future point when you get a test result that would require another biopsy that you would rather just go for the BPM and have them test all the tissue outside of your body. 

Remember, there is much less tissue there after mastectomy, but if something funky shows up, like fat necrosis, you still may wind up needing a biopsy just to be sure that it is benign.  There are no absolute guarantees, you just have to put together a plan that you can live with, and be ready to go with plan B, and plan C if needed.

Wishing you inner peace with whatever decision you make.

Pat

wallycat

This is a very personal decision and only you can truly decide how OK you are with it.

 Here are things to think about:

how attached are you to your breasts (some women will do anything to keep them; others not)

How big a worrier are you?  Do the 6 month follow-ups drive you nuts or can you go in calmly and not let it phase you?

Do you worry about how much radiation, etc. you are getting with the 6 month follow ups?

Do you worry that tamoxifen side effects will be terrible?

As you pointed out, being at higher risk does not mean you may ever get breast cancer....how comfortable would you be if they dx you with it?  Would you regret leaving your breasts and letting cancer control how much it can or cannot spread?  Would you be upset if you did the surgery and had a recurrence?

 How are your sis and mom doing?  What have they said?  What type of cancer did they have and treatments they can share?

It's easy for any one of us to tell you what we did and we'd do it again, but we all have such different personalities.

Best to you with your decision.

Anonymous

zengardnz-----wallycat  brings up a lot of things to think about, and as Pat said, it is not an emergency, so you have time to do your research and make decisions. Don't let anyone rush you. I can't tell you what to do, but I can tell you what my experience has been. I was diagnosed 5 years ago with LCIS (a step further along the bc spectrum and double the risk of ADH)  and have family history as well (mom had ILC) so the combination makes me high risk. At the time, my surgeon gave me 3 options: 1) close monitoring  2) close monitoring and tamoxifen or  3) BPMs.   I was already watched pretty closely due to my mom's bc and all my docs felt that BPMs were too drastic for my situation, so I chose # 2. So I have mammos alternating every 6 months with MRIs, see my oncologist every 6 months on the opposite schedule for breast exams (so I'm "seen" by some method every 3 months actually), and have about 2 more months to go to finish up my 5 years of tamoxifen, which I've tolerated well overall. I do OK living with the high risk for the most part, just get a little apprehensive at test time. I've had some "spots" show up on MRI, but clear f/u US and mammos and no additional biopsies needed. I didn't think the BSGI was available yet outside of clinical trials--was it difficult to get your doctor to order one? and how about the PEM? I'm kinda surprised that you've had all that advanced imaging and several biospies, but they haven't sent you to an oncologist yet. While the surgeons can be great, it's the oncologists who are the cancer specialists and can figure out your  overall risk of bc and your risks and benefits in taking a preventative medication like tamoxifen. It is such a personal decision, It really is how much risk you can live with; some with my level of risk would choose BPMs. I am so closely monitored that if anything were to crop up, it would most likely be found very early. Just remember to always make your decisions out of knowledge and not out of fear. Feel free to PM me if you want to talk.

Anne

danie22

I'm a new-be to all this BC stuff.  I'm catching on pretty fast and was wondering if there is any kind of acronym list?  I'm trying to educate myself so I too can make educated decisions and on top of my own issues. 

Keryl

I had unilateral in July; am now half way through chemo, will have rads. I have explander in and will need exchange. My initial decision was not to act on healthy breast - feeling that I would be closely monitoring it and act if nescessary. I had genetic test, it was negative. (not sure I believe it) Oncologist felt so many women doing bilateral out of fear - not from evidence. Tamoxifen would protect other breast, etc. Now, after going through the mast, expander and chemo - I am starting to wish I had bilateral. I never want to have the chemo process again and cant help but wonder if I would have enough early warning on the right breast or find out that it had already spread - hence, needing chemo again or worse. All of this is so overwhelming. Anyway, before I have my exchange surgery which is still months away, I may revisit my decision. Not sure how that would all come together - if insurance would cover, etc. but I will research my options. In any case, I feel going through this initially as unilateral etc, I am in a better place to take this next step, even though a bit out of sequence.  Not sure if this helps, but thanks for listening. 

Anne, what is BPM....something "monitoring" but I am not familiar with that acronym either.

Even if I dont revisit the bilateral, I  figure if I get early warrning of any sort on right breast, it is so outta here!

Anonymous

.keryl----BPMs==bilateral prophylactic mastectomies

NikiC

I was/am in the same exact position.  Last Feb after receiving a negative mammo, my MRI came back positive.  Since my sister and mom both had BC I requested the MRI.  After my biopsy showed that I had atypic (pre-cancer) in the left breast I went ahead and had genetic testing done (my insurance paid for this).  It came back that I had a mutation of unkown significance on BRCA2.  I always knew that if I was faced with this dilemma that I would have a PBM.  I did not want to go through so much screening (I'm only 50) and I did not want to take Tamoxifen and deal with those side effects.  What really convinced me though was that if I had the PBM I would be able to avoid never having chemo or any lymph nodes removed if cancer did arise in the future.  So anyway 3 weeks ago I had the surgery which was very easy and now have the expanders in which I honestly dont like.  I am very small so they do feel somewhat uncomfortable at times but nothing that advil and percocets once in a while can't control.  I'm hoping to get the implants in about three months since I do not want to go very big, only a size B.  I can not wait for that surgery.  My pathology findings from the mastectomy showed that I still had some atypia but this time in both breasts which wasn't even known.  So if I didn't have the surgery, right now I would be walking around with atypia (pre-cancer) in both breasts, and enduring other biopsies and hoping that it didn't advance to cancer and have to have them removed anyway but also to probably have to go through chemo.  Well that's my story, but you have to decide for yourself how you want to live you life with screening, etc.  I may never have gotten cancer either but this way I know I wont!  Lots of luck to you!