GAIL model vs. Tyrer-Cuzick model for assessing risk

I have classic LCIS and ALH, and wanted to know my future risk of bc. The modified Gail model automatically excludes me because of my LCIS diagnosis. But I wanted to have an idea. My primary care doctor hinted that they don't really know.

Your doctors may give you numbers, but, in my case at least, they didn't give me a clue as to how well they know that information. They know the information quite well for a population of women, but they don't know the numbers at all well for individuals. In words, they have a really have little idea about YOUR risk of breast cancer. Breast cancer prediction for individuals is in its infancy.

My eyes were opened by this editorial in a professional journal. The Gail model is used much more commonly than any other model, so if the statistics are this terrible using the Gail model, you can imagine the database they used for other models (with the possible exception for BRCA/high radiation exposure such as lymphoma treatment, etc.) In the additional information for the modified Gail model on the NCI database it states Although a woman's risk may be accurately estimated, these predictions do not allow one to say precisely which woman will develop breast cancer. In fact, some women who do not develop breast cancer have higher risk estimates than some women who do develop breast cancer. http://www.cancer.gov/bcrisktool/about-tool.aspx

From reading posts from other LCIS women, some of whom wanted bilateral mastectomies, sometimes their surgeons did use the Tyrer-Cuzick model to get insurance coverage, but that does not mean they know the numbers any better.

In other words, for 59% of the randomly selected pairs of women, the risk estimated for the woman who was diagnosed with breast cancer was higher than the risk estimated for the woman who was not. Unfortunately, for 41% of the pairs of women, the woman with breast cancer received a lower risk estimate than her cancer-free counterpart. Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much. http://jnci.oxfordjournals.org/content/98/23/1673.

I don't know if you can provide a link or not; I can't find the info at NCCN without a login.

Is the situation different if you have LCIS or AH?

As was recently shown by Boughey and colleagues, Tyrer-Cuzick did not predict well for women with either atypical hyperplasia or LCIS (7). Furthermore, there has been limited validation of these models. Tyrer-Cuzick and BRCAPRO were validated among high-risk women, (8, 9), but Claus has not been previously validated.

http://cebp.aacrjournals.org/content/22/1/146