What is the definition of high-risk in terms of genetic testing?

I am sorry you are going through this. Of course you are impatient and scared, especially when you have have so many people close to you have cancer.

I have not had genetic testing, but I did have genetic counseling. When I found out how low my genetic risk was, I chose not to have testing, partly because I'd have to pay out of pocket.

I hope you too will have genetic counseling when you get your results. My genetics counselor did NOT push me to have any certain treatment. She strongly implied that some people with a very high lifetime risk for breast/ovarian cancer choose to have watchful waiting, or some other treatment choice. From what I understand, prophylactic mastectomies are not something that doctors demand that you get; they may tell you that you have options X, Y, and Z. From what I understand, some BRCA1/2 mutation carriers have different risk: if you have a common mutation then they may have a good idea of your risk. Normally, prophylactic mastectomies is normally an individual choice: you always have the option of refusing to have one if that choice is not for you.

I am at increased risk due to other factors (LCIS, ALH) which are probably much lower than the potential risk of someone with a BRCA1 and/or 2 mutation or someone with a strong family breast/ovarian/pancreatic cancer history.

I was told that although there is more cancer in my family than average, I was told I have the risk of a BRCA mutation of an 'average' Ashkenazi Jewish woman.

From being at higher-than-average risk, I've read papers concerning breast cancer risk. LCIS is sometimes described as 'high risk' and sometimes as 'moderate risk'; one paper described LCIS both ways in the same paper! I have seen papers describe ALH or ADH as 'high risk'. Perhaps its like asking, "How high is high?"

But all these papers are describing the risk of the population of people that have this risk factor. Being selfish, we normally are concerned about our risk: in other words, we want to know 'What is MY risk of having breast cancer?" Except possibly with the exception of very high risk groups with BRCA, this paper opines that we know very little about the breast cancer risk of an individual. http://jnci.oxfordjournals.org/content/98/23/1673....

If I could go back to my genetic counseling, one question I would have asked her is 'How well do they know what you are telling me?" That may make your choices more complicated, but you would have a better understanding of the numbers they give you.

I think the definition of 'high risk' is relative. In other words, I don't think there's an absolute number where you are 'at high risk in terms of genetic testing'.

I think the highest estimated breast cancer risk factors include: known BRCA1 and/or 2 deleterious carriers, women who have had chest TREATMENT radiation (such as for lymphoma) ~aged 10-30, and people with very strong family history. (Some posters here have listed that about 90% of the women in their families going back 3 generations had breast and/or ovarian cancer, yet they tested negative for known BRCA mutations.) (besides being a woman.

You will probably get different options how to handle your situation. Different doctors may advise different treatments, or one of several treatments. You may want to get several different opinions.

This is what the nci site says

How much does having a BRCA1 or BRCA2 gene mutation increase a woman's risk of breast and ovarian cancer?

A woman's lifetime risk of developing breast and/or ovarian cancer is greatly increased if she inherits a harmful mutation in BRCA1 or BRCA2.

Breast cancer: About 12 percent of women in the general population will develop breast cancer sometime during their lives (4). By contrast, according to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by age 70 years (5, 6).

Ovarian cancer: About 1.4 percent of women in the general population will develop ovarian cancer sometime during their lives (4). By contrast, according to the most recent estimates, 39 percent of women who inherit a harmful BRCA1 mutation (5, 6) and 11 to 17 percent of women who inherit a harmful BRCA2 mutation will develop ovarian cancer by age 70 years (5, 6).

It is important to note that these estimated percentages of lifetime risk are different from those available previously; the estimates have changed as more information has become available, and they may change again with additional research. No long-term general population studies have directly compared cancer risk in women who have and do not have a harmful BRCA1 or BRCA2 mutation.