High risk for years and face decisions

I have classic LCIS, ALH, and ductal hyperplasia.  I took tamoxifen for 5 years.  I had some 'warm flashes' the first few months (but I was perimenopausal so I don't know if those would have happened anyways).  During  the 5 years on tamoxifen, I had endometrial polyps removed about every 18 months.  All were benign.  (I also had pre-tamoxifen endometrial polyps so its also difficult to tell if the endometrial polyps were from the tamoxifen.)   I did not have routine transvaginal ultrasounds, but only had transvaginal ultrasounds when I had irregular bleeding. I kind of 'landed' into tamoxifen because the only breast surgeon in my insurance said she did not want to do any surgery on me, I didn't want to pay the huge out-of-network fees, and I wanted to do something.

If I had the choice to make again,  given the same circumstances, I'd still choose tamoxifen.  But everyone is different.

As far as breast issues, I had 2 breast biopsies (2 different spots in the same breast biopsied a week apart in 2007) 6 months after starting tamoxifen.  Both were  nothing worse than what I had.  I've been followed by yearly mammograms and twice-a-year clinical exams, and I haven't had any breast issues since my 2 biopsies in 2007.

I am relatively new to all of this myself.  Dx with ALH/ADH/LCIS back in August/Sept of this year...agonized over the tamoxifen decision for about one month...finally decided that my BS advice was sound in that if I tried it - I could make the choice to stop if SEs were unbearable....someone on one of these boards wrote a sage piece of advice (at least I thought it was)...she said that if down the road she ended up having Invasive BC and she had done nothing to prevent it...she just didn't think she could live with that...but that if she had done everything she could to try and prevent it...that she thought it would be easier to live with knowing she had done all she could.  I have now been on the Tamoxifen for almost three weeks...and so far have done well.  I have felt a bit more tired, don't really have much of an appetite (but no nausea) and the only other SE that I am still trying to figure out if it is connected is some lower abdominal achiness.  I was absolutely terrified to take that first pill - but I finally decided that a risk reduction of 46% was worth a chance.  If, down the road the f/u visits find more need for biospy...then I will consider PBMx at that time.  I think it all boils down to listening to the advice of experts and then looking inside yourself to decide what you can personally live with.  This is not an easy decision to make, but the other ladies have given great advice when they tell you to keep on asking until you feel some level of comfort.  I will pray you peace and wisdom as you go through the process.

Kimber, ultimately you have to do what you feel comfortable doing.  But you should know that there is more to BRCA testing than female breast cancer.

If you test positive, you may also be at high risk for ovarian cancer, which is more difficult than BC to detect and therefore is often found when it is later stage, impacting survival rates.   When I had my BRCA test, I knew that if I tested positive, I would have an oophorectomy; I reserved judgement on whether or not I would have a prophylactic mastectomy.  It turns out that I tested negative so I didn't have to make that decision. 

If you test positive, male members of your family may be affected to.  The genes that increase BC risk don't just affect females, they affect men too.  Men can get breast cancer, or they may get prostate cancer, which is also related to this gene.  There are other cancers for which there also might be an increased risk, affecting both the men and the women who carry have this gene. 

Not all BRCA mutations are the same. Some confer a high breast cancer risk, others a lower risk.  So if you find out that you are positive, you will get more information about what your BC risk is, and what your other risks are.  That will allow you to make an educated decision about what preventative treatments or level of screening you want to have. And it will allow other family members - the males - to decide if they want to be tested too. 

And if you test negative, you might find that a weight has been lifted off your shoulders.