Age and BRCA testing

My grandmother died of breast and ovarian cancer. Two of my aunts have/had breast cancer. One died and one is currently terminal. My sister was recently dx'd with DCIS and just had a lumpectomy last week.



I'm 46 and I just got a call today that my mammogram has an abnormality. I have an area of parenmchymal asymmetry. They also noted that my breast is heterogeneously dense, which I'm assuming makes it difficult to get a clear xray of the area. I'm pre-menopausal.



My grandmother was probably in her 60's when she got breast cancer. That was over 30 years ago and her lousy doctor didn't bother treating her. Her daughter died in her 60's. Her other daughter is late 70's and I don't know how long she had cancer before it was diagnosed a few years ago. I just remembered that this aunt recalled that her aunt (my grandmother's sister) also had breast cancer.



My sister who just found out she has DCIS is 53. She went through menopause a few years ago. Her oncologist said that they usually test women for the BRCA genes when they are are younger than 50. But if her insurance company would cover it, they were considering testing her. Given the age of the women with breast cancer in our family, does it make sense for us to test for BRCA?



I don't know if I have breast cancer at this point, but if I do, then we really do have a cluster in our family. I think we're mostly concerned about the potential of ovarian cancer.



Thanks for any suggestions about testing.

I have a question, if you all would help me with some conjecture... I'm trying to make some guesses of when my family members might have initially gotten BC.



If a woman gets DCIS and isn't aware of it and/or doesn't treat it, how long do you think it would take to turn into metastatic cancer? Here's what I know about my grandmother. When I was a child and she was 72 years old, she was concerned about her breast. Her nipple was inverted and obviously something was pulling it in and she had a discharge. This was in the 1970's. Her GP, who was an old man at the time and not modern in any way, told her that it was likely BC, but she was too old to bother treating it. It took another 10 years to kill her (no treatment of any kind) and her death certificate has ovarian cancer listed as cause of death.



I'm wondering if she initially had DCIS, how long it would take to get to the point of invasive cancer, pulling her nipple in and causing discharge.



Her daughter (my aunt) was in her 60's when she died. I didn't know her well enough to know if she bothered with routine mammograms or anything. I think that she was dx'd at a late stage with her BC. She had bone cancer when she died.



The other aunt who is terminal now, is in her late 70's. I have no idea when she was dx'd or what stage, but she's not on top of things and I can't imagine her doing her routine screenings and taking any part in her own health care. She knows very little about her cancer and just knows that the doctor said she has a year or so left.



My sister has DCIS. She's 53 and she hadn't had a mammogram in several years. So, we don't know how long it's been since it started. But, I'd guess around 50. I'm wondering if our aunts and grandmother started with DCIS at a similar age and since they didn't know, how long it would take to reach the point of Stage IV cancer?



So... just trying to put our family BC history together and trying to figure out what the true age of onset really is.



Sorry for my rambling...

Thanks, Susan.



I just spoke to my sister and we're having the initial meeting on genetic counseling on Wed.. I got some information wrong from my sister. The NP told her that they normally don't BCRA test after 50. But, my sister's oncologist wants her to test. She's looking into insurance coverage now.



I should know more about my own situation on Tuesday when I go back in for my spot compression views. I really do want to have the information about my BCRA status if I can get my insurance to cover it.



I guess I'll cross each bridge as we get to it. I was hoping my sister would get the BCRA testing before making decisions about treatment. She's set on the lumpectomy/radiation path now.



Thanks for your help and for sharing the information and your own story. It gives me hope to see so many survivors who are doing well.

I know an American woman in Britain who has had BC and nearly every female member of her family has had it. She goes to Royal Mardsen, the big cancer hospital over there and she's been advised against testing. The reason her oncologist gave was that it can ruin your life with mortgages, jobs, etc. I would assume that info would be kept confidential. She gets checked very often (had lumpectomy), but I don't see how BC checks will help with risk of ovarian cancer if she carries the BRCA genes.



I'd love to get some info on age and BRCA. I feel like I'm waiting for the other shoe to drop with BC myself and with my sisters. I'd feel better having more info to help determine more about our risk.



Thanks for your offer. I've been to the FORCE website a bit, but I'll check it out more thoroughly. I'll email you later on tonight.

I thought the Brits had medical privacy laws. But, the oncologists are recommending against the test based on privacy concerns. Another friend just told me that she was advised against taking the test for these reasons. She and her sister both have BC.



I'm not so sure our medical info is any more private here than there. But I really don't see how banks and employers could get this info about us. It would make us uninsurable for private health insurance, but so does BC. In the case of a woman who's never had BC, but tested positive and had prophylactic surgery, it would make sense that she not be declined by private insurance. But, I'm guessing that they would decline a person with these circumstances. I was in perfect health and was declined health insurance because I'd had infertility treatment in my late 30's. I'd had a normal pregnancy with no complications and was in my 40's with no plans for continuing treatment. I was still declined even without maternity insurance coverage.



So, the only issue I can see due to testing positive is the possibility of not getting private health insurance. I can't imagine it would impact us in any other way.