What is high risk ??

HIgh risk for invasive cancer? High risk for death from breast cancer?

I think that the words 'high risk' are in the eyes of the beholder. Even assuming that you can accurately evaluate your risk (which I don't think you can very well- at least for you as an individual), how high is high?

I've quoted this paper many time before. http://jnci.oxfordjournals.org/content/98/23/1673.... Its about the modified Gail model, which automatically excludes both you and me. Its meant to predict the average breast cancer risk of a group of women (without breast cancer) with certain risk factors. Unfortunately, its a really poor model for predicting the risk of any certain individual.

I figure that if they know this little about predicting risk for an 'average' group of women without breast cancer, just think how well they know the risk of a person who has some risk factors?

I know they know practically zip about LCIS, but I have seen or gotten lifetime risk predictions for breast cancer that range from 10% to 90% (the 90% in a non-peer reviewed calculator.) That's a pretty wide range. In ONE paper, in different places they described LCIS as a 'high risk' and a 'moderate risk' condition.

I would imagine that having a mastectomy greatly reduces your risk, but there are always some breast cells left.

Some doctors say things in notes in order to get insurance to pay for them. I have LCIS and sometimes my gyn described me as having breast cancer, even though almost no oncologists would (or should). (I was having a D+C for uterine polyps when I was taking tamoxifen.) Sometimes the people who are reviewing surgeries and treatments do not know all that much. I certainly remember an infectious disease specialist (MD of course), and he was challenged by the insurance company about an antibiotic treatment he recommended. The insurance company suggested a cheaper antibiotic. He pointed out that the antibiotic the insurance company was suggesting did not cover that particular bacteria!

All this is very anxiety provoking, especially when you are newly diagnosed. But as you learn more, eventually most people come more to terms with their situation.

Perhaps the oncologist considers you high risk because of ER/PR- and HER+ and your age? Or maybe he mentioned that because you will need ultrasounds on the remaining breast because of dense tissue? All you can do is to be vigilant about your follow ups and keep up your healthy lifestyle.

oh n Praise God 21yr Survivor. msphil

I think its very important to understand not only when a doc gives you a certain risk, but how well they know it. In the case of breast cancer, its NOT MUCH.

But the Gail model has some limitations. It has predictive value only for women over age 35 who have not previously been diagnosed with breast cancer,⁶⁷ and it does not incorporate specific genetic risk factors. Although it is highly accurate at predicting the aggregate number of women within various age or other risk groups who will develop breast cancer within 5 years, its ability to predict which individual women will develop breast cancer is only slightly better than chance.⁶⁰ It is, nonetheless, used to assist in determining whether individual women should engage in cancer prevention measures, because there are no better models that have been validated for individual risk prediction. (emphasis mine). http://www.ncbi.nlm.nih.gov/books/NBK22312/

Even different breast cancer risk model differ. In this paper, of 3 breast cancer risk models, Our analyses found that of the 5,894 women in this study, 342 (5.8%) were eligible for MRI by at least one of the models. There were large differences in the number of eligible women by each model. Most notably, the Tyrer-Cuzick model identified 330 (5.6%) of the study population to be eligible, whereas the BRCAPRO and Claus models identified many fewer eligible women (25, 0.4% and 54, 0.9%, respectively; Fig. 1). Surprisingly, only 13 women (0.2%) were identified to be eligible by all 3 risk models. When the BRCAPRO model results were adjusted to approximate the additional risk of DCIS, we found that these results changed slightly (Fig. 2). This adjustment identified more than twice as many women (61 women, 1% of the study population). Yet, the overlap between the models changed very little with only 18 individuals (0.3%) identified by all 3 models. (emphasis mine) http://cebp.aacrjournals.org/content/22/1/146.lo

If they have this much trouble predicting the risk of women in the general population, just imagine the trouble they have in ONE woman who have some type/risk factor not included in the model.

Even if you define 'high risk' as >X%, they sure don't know the value of X very much at all for any individual person.

So if someone gives you figures about your risk of breast cancer, they sure don't know that number very well AT ALL.