Determining High Risk, how to get more info?

I don't know answers of all your questions, but may be able to give a perspective on some of them.

Different doctors and different insurancers have different opinions.  Different countries probably have different opinions.  (For example, I have classic LCIS, and my breast surgeon told me she 'did not want to do any further surgery on me'.  But the risk of future bc for LCIS patients (at least do not have further more intense risk factors) is much less than many BRCA + patients.)

When I had genetic counseling (I was not at high enough risk to qualify for insurance covering testing), they wanted (if possible) actual death certificate diagnoses. If they do genetic testing, they usually want to test people who a) are alive and b) actually had breast or ovarian cancer.  They want this information because often times, particularly decades ago, there were often 'family myths' - that the person had 'stomach' cancer rather than ovarian, or pancreatic cancer instead of ovarian, or if they had breast cancer and it spread to the brain, they would say they had brain cancer, etc.  I know with my grandmother, who was diagnosed with bc in the early 1950s, I was told the subject of breast cancer or cancer was taboo. 

Even 50 years later, some 30 years after my grandmother's death, the subject was somewhat taboo.  I guess this was partly because she had only sons, and the diseases of breasts were not a popular subject for her sons.

Here are the general guidelines from the USPTF. http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

It is always preferable that someone who has had cancer gets tested first because these individuals, by virtue of having already had cancer, are known to be high risk. They've already passed the first bar.  In your case, you are only speculating that you are high risk, based on your family history. So I agree with MelissaDallas - you should see if your mother is willing to be tested.  And you should see if your father's twin sister is willing to be tested.  That would check out both sides of your family.  If a genetic mutation is found on either side of the family, you would be eligible for testing - and the testing would be quicker and less expensive, since they would know exactly the mutation they are looking for.

Leaf - You are so right about family myths. All these years I thought my older sister died at 4 yrs of neuroblastoma. Even my own dad and grandmother thought that. It was even in my sister's baby book. However I had a chance to talk to my aunt this past year, she is a nurse, and helped care for my sister. She happened to mention that my sister passed from Wilm's disease. I pounced on that and we realized she'd had nephroblastoma not neuroblastoma. (Backed up by the fact that my sister had a kidney, adrenal gland, spleen, and such removed.) (That, too, was in the baby book.)

Interestingly I read a study recently that linked BRCA (2?) to Wilms disease. My onco is so smart, she said that since my mother passed so young from BC she may have been BRCA positive, but I did not inherit the mutation. Very interesting idea!

If your mother tests positive, the brca testing for you for that specific brca mutation would be several hundred dollars.  Now, you might be able to shop around to different labs since more labs than just Myriad are going to be doing the testing.

Maby I am the oddity here? I havent even considered doing the gene testing. I would be very surprised if my bsbc covered it as this ins is very different and stricter than the one I had almost 4 years ago. I didnt have the testing when I got cancer, because my sister had it at 26, my mom then got it, then me at 53, and my cousin on my moms side was diagnosed a couple years ago . I just kind of felt like duh, kind of seems like it is in the family big time. My daughter has been able to get mammogram at earlier since she is high risk. I worry about my sister's daughter because she is just past the age her mother was diagnosed. Sister presented with lump under arm, then had lump in breast. Mom presented with lump in left front at bottom of bra. Theirs went into the lymph nodes big time. Mine was caught very early. I wish very much that I had had bilateral instead of uni, as still worried at mamo and sonogram. Am about to try for mastectomy for right.

This is from  the NCI website

1. 
What does a negative BRCA1 or BRCA2 test result mean?


 
How a negative test result will be interpreted depends on whether or not someone in the tested person’s family is known to carry a harmful BRCA1 or BRCA2 mutation. If someone in the family has a known mutation, testing other family members for the same mutation can provide information about their cancer risk. If a person tests negative for a known mutation in his or her family, it is unlikely that they have an inherited susceptibility to cancer associated with BRCA1 or BRCA2. Such a test result is called a “true negative.” Having a true negative test result does not mean that a person will not develop cancer; it means that the person’s risk of cancer is probably the same as that of people in the general population. <emphasis mine>


In cases in which a family has a history of breast and/or ovarian cancer and no known mutation in BRCA1 or BRCA2 has been previously identified, a negative test result is not informative. It is not possible to tell whether an individual has a harmful BRCA1 or BRCA2 mutation that was not detected by testing (a “false negative”) or whether the result is a true negative. In addition, it is possible for people to have a mutation in a gene other than BRCA1 or BRCA2 that increases their cancer risk but is not detectable by the test(s) used.

2. 
What does an ambiguous BRCA1 or BRCA2 test result mean?
 
If genetic testing shows a change in BRCA1 or BRCA2 that has not been previously associated with cancer in other people, the person’s test result may be interpreted as “ambiguous” (uncertain). One study found that 10 percent of women who underwent BRCA1 and BRCA2 mutation testing had this type of ambiguous result (16).
Because everyone has genetic differences that are not associated with an increased risk of disease, it is sometimes not known whether a specific DNA change affects a person’s risk of developing cancer. As more research is conducted and more people are tested for BRCA1 or BRCA2 changes, scientists will learn more about these changes and cancer risk

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA


So, I am guessing that if you have tested positive for a  deleterious BRCA1 and/or 2 mutation, and your daughter has a true negative for the BRCA1 and 2 mutation, then it is likely that she won't have to undergo any screening until people in the general population do. But obviously, I'd check with your genetic counselor about this.

I had the comprehensive test done and was surprised my insurance company is covering it BUT it had to be done through a genetic counseling office. My family history is also ambiguous. Getting information from family members was difficult and piecemeal and sometimes the information didn't match. I did the best I could, but I think the testing is covered more because of my own DCIS diagnosis at 44 than family history.  

If insurance requires it and pays for it then I will humor them and get it. Otherwise all of us know we are at risk for other stuff and will let family doc still do our prevention and just be diligent. When it boils down to it, I still think that a gene test will not make a difference to us. But thats just me

i live in ga and have aetna and they paid for brca1, but not brca2 which was $700. i did not have to produce death certificates or any proof, which was a relief as that would have been very difficult. so far, my sister (bc in late 30's) and i are both brca negative. i'm going for mammogram, ultrasound, hopefully an mri in the next few weeks.

myriad will let you pay interest-free over 24 months any balance that insurance will not pick up. hope this helps.

My mom was diagnosed w/BC at 39, had the genetic testing done at 44 and was BRCA2 positive. (She has 2 maternal great aunts who have had BC, and a 3rd who died from ovarian cancer). Both my sisters had the test done earlier this year and both are BRCA2+. I met with my mom's breast surgeon to discuss options prior to having the genetic test done myself. She said that if I was negative, that I would fall into the recommendations for the general population, which is to start with annual mamograms at age 40. If I was positive, then we would start discussing preventative treatment options - prophylactic mastectomy & partial hystorectomy, tamoxifen daily for 5 years, or a mamogram/MRI which rotates every 6 months (forever) starting immediately. I'm not sure yet which option I'll go with; however, now I know that I have to be proactive and do SOMETHING - whether it's surgery or close monitoring (doubtful I'll opt to take the medication). I'm 30 years old (my sisters are 22 and 24) and we all now have knowledge that we could develop BC well before the recommended age to start getting checked. We all 3 have some tough, personal decisions to make in the very near future.

Regarding payment for the test - the insurance only tested for the same gene mutation that my mom had. The cost was $375 (Myriad) - I'm yet to find out how much my insurance is picking up of that. I figure that I can afford to pay up to $375 and knowing is well worth it, and it's an amount that most people could save up and afford.