How high is "high risk"?
When I have looked online at the forums here and on other websites, I'm frequently seeing people who mention being high risk because they have a lifetime calculated risk somewhere between 20% and 45%. I'm not seeing anyone mentioning a risk higher than that.
I have a Tyrer-Cuzick model 73.2% calculated lifetime risk. I checked with my breast surgeon's office to see if they think that this model is fairly accurate, since this seemed really high to me. She said that they typical use the Tyrer-Cuzick in their office. She said that this model does tend to overestimate risk (particularly in patients with a family history of breast or ovarian cancer). But she said she doesn't believe my score is terribly far off because I have ADH, LCIS, and because of how young I am (I'm 42 yrs old).
I find that interesting — my score is not skewed due to family history, as I have no known family history of breast cancer. (And my great grandmother had ovarian cancer, but the Tyrer-Cuzick model does not ask about great grandparents). I also have very dense breasts, which I know is a risk factor too. And I have had genetic testing, and I do not have any gene mutations. (I also have a little bit of Ashkenazi Jewish ancestry, but it is only a small percentage of my total ancestry, and I didn't want that to potentially skew my results. So I also ran the calculator and told it that I had no Ashkenazi ancestry, but it only changed my score a little bit: to 70.1%).
Has anyone else had a 50% or higher calculated lifetime risk with the Tyrer-Cuzick model? What was your situation? What did your doctors recommend doing? And what did you end up doing?
Here's my history in a nutshell: I had a lumpectomy in August to remove calcifications with ADH, and that's when they found LCIS too. (Incidentally, when I had a breast MRI they also happened to find that I had a lung tumor — which was very unexpected because I'm healthy and I had 0 symptoms at all. We learned it was a really rare type of lung cancer, I had my upper left lobe of my lung removed last month, fortunately recovered quickly from that surgery, and luckily I don't need to do chemo — just CT scans every few months to monitor it). I am already doing the high risk breast cancer screenings with alternating mammograms & MRIS. My breast surgeon's office suggested Tamoxifen, but I've decided not to take it (I'm not usually one to be overly concerned about medicines and side effects, but I don't have a good feeling about this medication. And my oncologist said she wouldn't necessarily recommend Tamoxifen for preventative use in my case due to the increased risk of cervical cancer). I have been considering a preventative mastectomy (even before calculating my risk), and I've consulted with each of my doctors about that, and am not giving myself plenty of time to consider that option.