Am I high risk

I am so sorry you are going through this.  It must be really, really difficult having just seen your mother die through breast cancer.

If I were you, I would get a ruler using the millimeter scale, out and try to measure your lump (biggest dimension and then dimension 90 degrees from that dimension.)  See if it changes in size with your menstrual period.  If it does change size with your period, then it almost certainly is NOT breast cancer.  Cancer, by definition, means uncontrolled GROWTH, and if it shrinks, that is not growth.

If it does NOT change size, or only gets bigger with a complete menstrual cycle, then get it checked out by your doctor. 

Only about 15% of breast cancers are thought to be due to a single inherited gene.  There are almost certainly breast cancer gene(s) that we do not know about or can test for.  There are genes other than BRCA  we can test for, but these genes are quite uncommon. These are the guidelines for BRCA testing from the US Preventative Task Force. 

These recommendations apply to women who have not received a diagnosis of breast or ovarian cancer. They do not apply to women with a family history of breast or ovarian cancer that includes a relative with a known deleterious mutation in BRCA1 or BRCA2 genes; these women should be referred for genetic counseling. These recommendations do not apply to men.

Although there currently are no standardized referral criteria, women with an increased-risk family history should be considered for genetic counseling to further evaluate their potential risks.

Certain specific family history patterns are associated with an increased risk for deleterious mutations in the BRCA1 or BRCA2 gene. Both maternal and paternal family histories are important. For non-Ashkenazi Jewish women, these patterns include 2 first-degree relatives with breast cancer, 1 of whom received the diagnosis at age 50 years or younger; a combination of 3 or more first- or second-degree relatives with breast cancer regardless of age at diagnosis; a combination of both breast and ovarian cancer among first- and second-degree relatives; a first-degree relative with bilateral breast cancer; a combination of 2 or more first- or second-degree relatives with ovarian cancer regardless of age at diagnosis; a first- or second-degree relative with both breast and ovarian cancer at any age; and a history of breast cancer in a male relative.

For women of Ashkenazi Jewish heritage, an increased-risk family history includes any first-degree relative (or 2 second-degree relatives on the same side of the family) with breast or ovarian cancer.

About 2 percent of adult women in the general population have an increased-risk family history as defined here. Women with none of these family history patterns have a low probability of having a deleterious mutation in BRCA1 or BRCA2 genes.

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Not all women with a potentially deleterious BRCA mutation will develop breast or ovarian cancer. In a woman who has a clinically important BRCA mutation, the probability of developing breast or ovarian cancer by age 70 years is estimated to be 35 percent to 84 percent for breast cancer and 10 percent to 50 percent for ovarian cancer.

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Breast and ovarian cancer are associated with a family history of these conditions. Approximately 5 percent to 10 percent of women with breast cancer have a mother or sister with breast cancer, and up to 20 percent have a first-degree or a second-degree relative with breast cancer.^1-6 <snip>

No direct measures of the prevalence of clinically important BRCA1 or BRCA2 mutations in the general, non-Jewish U.S. population have been published; however, models have estimated it to be about 1 in 300 to 500.^13-16

http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm

This is from the NCI site for more genetic information:

Breast and ovarian cancer are components of several autosomal dominant cancer syndromes. The syndromes most strongly associated with both cancers are the BRCA1 or BRCA2 mutation syndromes. Breast cancer is also a common feature of Li-Fraumeni syndrome due to TP53Cowden syndrome due to PTEN mutations; and with mutations in CHEK2 .[9] Other genetic syndromes that may include breast cancer as an associated feature include heterozygous carriers of the ataxia telangiectasia (AT) gene and Peutz-Jeghers syndrome. Ovarian cancer has also been associated with Lynch syndrome, basal cell nevus (Gorlin) syndrome (OMIM), and multiple endocrine neoplasia type 1 (MEN1) (OMIM).[9] Mutations in each of these genes produce different clinical phenotypes of characteristic malignancies and, in some instances, associated nonmalignant abnormalities. mutations; of

The family characteristics that suggest hereditary breast and ovarian cancer predisposition include the following:

• Cancers typically occur at an earlier age than in sporadic cases (defined as cases not associated with genetic risk).
• Two or more primary cancers in a single individual. These could be multiple primary cancers of the same type (e.g., bilateral breast cancer) or primary cancer of different types (e.g., breast and ovarian cancer in the same individual).
• Cases of male breast cancer.
• Possible increased risk of other selected cancers and benign features for males and females. (Refer to the Major Genes section of this summary for more information.)http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional

Yes, a board certified genetic counselor is in the best position to give you ideas about your risks. But there is an awful lot we don't know about breast cancer risk prediction.

I don't think that having a mother with breast cancer, by definition puts EVERY daughter at higher risk than the average woman.  Even if your mother had a known, deleterious BRCA mutation (assuming your dad didn't carry one) - and remember it is thought that only about 15% of breast cancer cases are thought to be from a single, inheritable mutation - each daughter would have (about) a 50% chance of inheriting this deleterious BRCA mutation.  If a daughter didn't inherit a BRCA mutation, then that daughter wouldn't be at risk genetically from that BRCA factor.  And not every woman who has a deleterious BRCA mutation goes on to have breast or ovarian cancer.

Now, there are undoubtedly a lot we don't know about the mechanism of how breast cancer develops, including genetics.

 Even the Gail model, while good at predicting how many women in a population will get breast cancer, is notoriously LOUSY at predicting which specific woman will get breast cancer. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf
  The Gail model is not a good tool to make treatment decisions.

"I don't think that having a mother with breast cancer, by definition puts EVERY daughter at higher risk than the average woman." 

I agree!

- If one's mother has a BRCA mutation and the daughter did not inherit it, then the daughter is at no higher risk than anyone in the average population. 

- If the mother doesn't have a BRCA mutation and the cause of her breast cancer is unknown, then breast cancer risk models will project that the daughter has a "moderate" increase in risk.  But here's what this really means:  It means that a minority of daughters will be at high risk because they inherited the (unknown) genetic cause from their mother, and/or they were exposed to the same environmental factors that led to the BC diagnosis.  But the majority of daughters will not have inherited these genes, and/or will not have been exposed to these same environmental factors, and these daughters will have a normal risk.  

Risk models work on averages.  If 10 out of 100 women with a particular background (specifically, a mother who had BC) are projected to get breast cancer within the next 20 years, because no one can know which of the individual women will be affected, all are considered to be "at moderate risk". But the fact is that 90 of these 100 women will not be affected by their mother's diagnosis and will not get BC.

Here is a great article about breast cancer risk.  It's pretty current - it's from August 2009  http://www.communityoncology.net/journal/articles/0608373.pdf   This article explains the problems with many of the risk models and with how women look at their breast cancer risk.  As this article notes "It has been well documented that most women, especially those with a family history, overestimate their risk of breast cancer. Women with an affected mother and grandmother may believe it is not a matter of "if " but "when" they will get breast cancer."  And that's simply not true.

But if the Gail Model is the only thing out there with which to access risk, what choice do we have? Or how do we make decisions? My Gail Model score is 42%. I am 42yo, just found a lump, turned out to be ADH. I am BRCA-. My mother had premenopausal breast cancer (I have no sisters or aunts). I have no idea what age I was when my period started (they're saying 13 just to put in something on the model). And my father's mother had breast cancer (which doesn't even count on the Gail model. I'm debating between tamoxifen and PBM. I also have been on antibiotics for about 8 years, pretty much straight for chronic UTIs, and now chronic lyme disease (which also puts me at greater risk). And I was on birth control pills for 15 years. To lower my risk, I had my first child before age 30 and breastfed all three of them for almost a year each. I don't eat any soy (intolerant) or any hormone-laden milk (milk intolerant as well). I've got to use something to make an informed decision. I don't want to just wait, and hope. I guess I'm saying if you guys say the Gail model is lousy, then what do we use to make decisions?

kjbrown, have you read the article in the link that I posted above?  It explains some of the shortfalls of models like the Gail model.  Risk is not the same if your mother had pre-menopasual BC vs. post-menopausal BC, for example, but the model doesn't account for that. Similarly, the Gail model assesses a higher risk if you've had a number of biopsies, but doesn't account for the results of the biopsies.  If all the biopsies are totally benign and show no high risk factors, then in fact your risk isn't any higher.  But if the biopsy shows ADH (as yours does), then your risk is higher.

Personally I think that the models are a good start in assessing risk but then you should look at each of your own risk factors to determine the severity and to determine if you are likely to be on the high side or low side of what the model says. While risk factors aren't additive, the more you have, the greater your risk is likely to be.  In your case, your mother having pre-menopausal BC clearly presents more of a risk than if she'd had post-menopausal BC. Was she BRCA tested?  If not, then your negative test is an "uninformed negative", meaning that it's good but it isn't particularly helpful in indicating if you may have inherited whatever caused your mother's cancer.  But if she was tested and she was BRCA positive, then you know that you do not have the same risk factors that she did.  As for the ADH, that in and of itself is probably a greater risk factor than your mother's history of BC.  In fact your ADH may be driven by your genetics.

Ultimately we all look at risk differently.  I'd say use the risk models, read up on different risk factors and how they affect you (here's some good info:  http://ww5.komen.org/BreastCancer/UnderstandingRisk.html ), talk to a genetic counsellor, understand what "high risk" really means in terms of BC risk.  Then consider and blend together everything you've heard and read until you feel that you have a good sense of what your risk level is.  Then decide what's the best course of action for you.

There are (at least) 2 ways of evaluating a model that has 2 outcomes for cancer prediction.   (In this case, get breast cancer or not get breast cancer.)

1)  One is looking at the the entire group of people.   In my citation, this study by De Carli was done to see if the women in Florence, Italy got breast cancer  in the same proportions as those in the  USA.  They did.  The Italian and Gail models estimated that 186 and 180 women, re- spectively, would develop breast cancer. The actual number was 194.  Good. The Gail model did quite well.  So we know how many people in a group would get breast cancer.  We know how about how much we need for chemo and radiation.

2) But, we as patients, being basically selfish people, want to know "What is MY risk?"

This is a quite different question.

They measure this  by what is called the concordance value.  What they do is separate the group into 2 groups:  the women who ended up getting breast cancer and the women who didn't end up getting breast cancer.

They take 1 randomly selected person from each group, and compare each pair's  score according to the model.  If the model worked perfectly, the person with breast cancer would ALWAYS get a higher score on the Gail model than the person without breast cancer, and the concordance value would be 1. 

If the model worked as well as chance (in other words, it was a lousy model), then the person with breast cancer would get a higher value half of the time, and half of the time they would get a lower value than the person without breast cancer.   In this case, the concordance value would be 0.5

In this case, the concordance value for the Gail model ended up being 0.59, and another model which had more risk factors (including breast density) had a concordance value of up to about 0.66. (this paper was written in 2006.)

So this means that 59% of the time the person with breast cancer had a higher Gail or Italian score than the woman without breast cancer.  But 41% of the time, the woman withOUT breast cancer got a higher value than the person WITH breast cancer.  The risk curves for the woman with and without bc are almost identical.  (see the citation.)

This paper also says that in order to get a better model - in order for the risk curves to overlap less - we need some risk factor that more clearly is different in each model.

Why is it so difficult to develop worthwhile breast cancer pre- diction models for individuals? First, the risk factors used in cur- rent models are widely prevalent throughout the population and are neither highly sensitive nor highly specific. In addition, a risk factor must be very strongly associated with a disease (with a relative risk of about 200) to be worthwhile for screening (18), and the same appears to be the case for accurate prediction using combinations of risk factors. Most risk factors for breast cancer are relatively weak. Even “strong” risk factors, such as older age, mammographically dense breasts, and radiation exposure, are as- sociated with relative risks of less than 10. [Deleterious BRCA1 mutations in young women may be an exception (19).]  (emphasis mine). http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

Since even a combination of risk factors seem to give no better accuracy, we have a long ways to get a useful breast cancer risk model.

Well, I'd want to make sure you understand the statistics.  Notice in that citation they 

Say a study finds that women who don't exercise have a 25 percent increase in breast cancer risk compared to women who do exercise: this statistic is a relative risk. http://ww5.komen.org/BreastCancer/UnderstandingRisk.html

Notice the first word in the sentence is say.   They are trying to give a hypothetical example.  

They are NOT NOT NOT saying that if you are inactive that your risk of breast cancer is 12% (the risk of the average woman in  the USA) + 25% = 37% lifetime risk.

Studies differ.  In fact, this study found NO association between inactivity and breast cancer risk.http://www.ncbi.nlm.nih.gov/pubmed/16322883

RE: BRCA: if they are going to do gene testing on a family, they normally FIRST test the person with the most obvious condition who is the most senior in the lineage who is alive - in this case probably your mother.   IF your mother tests unequivocally BRCA negative, then there is no point in testing you because it is highly unlikely you got a BRCA mutation from your father.