My brother participated in a genetics study related to autism.
A month or so back, he got a letter saying that he carried a “A PATHOGENIC VARIANT in the BRCA1 gene.”. Which of course means he’s at much higher risk for prostate cancer, melanoma, male breast cancer, pancreatic cancer. Presumably ovarian cancer, but I think that and the prostate cancer are mutually exclusive.
He HAS had prostate cancer - caught early, and treated more aggressively than the standard due to our father having died OF it, rather than WITH it, at not that much older.
Anyway, obviously I’ve got a 50% chance of carrying the gene, and will be seeking to find out for sure.
How does one go about doing this? Do 23-and-me and similar services detect that? Is it something a doctor would order? If I did go through a doctor, would that potentially cause issues with pre-existing conditions for health insurance purposes?
The risk of breast cancer by age 65 is quite large - > 60%. Ovarian cancer, not quite so high but close - 39-58%. As far as I know, I have neither! (though I do see the gyn tomorrow and will discuss it). I already get screened by a dermatologist every year, and melanoma has not been an issue. Interestingly, the correlation between this and colon cancer is questionable (some studies say higher incidence of it at a younger age, others do not) - but again, I’m being screened quite regularly for that. No mention of risk with lung cancer (what Mom died of - but she was a smoker anyway).
I’m not certain but I don’t think just asking about the test and discussing it with the doctor would affect your insurance. You’d have to be diagnosed of the disease and treatment started. Again I’m not certain what an insurance company would do if they found you had the gene years before you were diagnosed. They’d be jerks. As we all know they can be.
My Sister has had breast cancer and of course since the gene is in our family she insisted her adult daughters be tested only one carried the gene. She had a prophylactic mastectomy in her mid 20s. And, then reconstruction.
As far as I know her insurance covered it all.
(As an aside, the amputation affected her emotionally, more than she imagined it would. We tried to tell her it would. She didn’t buy it.)
I wouldn’t think that just ASKING would cause issues - and supposedly nowadays pre-existing conditions are less of a worry, but you never know. When we were thinking of reproducing, we went for counseling because there was a history of cystic fibrosis in the family (my husband had a 1 in chance of being a carrier). We did NOT run that test through insurance, at least not until ot came back negative! This was over 30 years ago, and back then it COULD be a problem.
We already have life insurance (and at nearly 65, with numerous health conditions, nobody would touch me anyway), and long-term care insurance - and at nearly 65, disability insurance will shortly be moot (plus we have it through work).
If I were younger though, I’d be very leery of having anything “on the record”.
Yeah, my gf had breast cancer and a lumpectomy. She was facing chemotherapy and radiation, but genetic testing made the chemotherapy unnecessary (meanwhile, I’d already shaved my head).
At the time her oncologist wasn’t sure if her insurance would cover the testing and my gf planned on paying cash. Turns out for some people chemotherapy is covered and they can’t afford genetic testing which wasn’t always covered. (Her oncologist told us this at the time)
My genetic testing was covered but excluded some tests. I was surprised not to have BRCA1 or 2.
I later used 23andMe plus an additional data-review service* and a state experimental testing program to try to fill in the gaps. A few years ago, I paid for the Breast Cancer Index (BCI) out of pocket because it wasn’t covered and my oncologist asked for it if I could afford it.
*(Which showed me to have no increased genetic risk for breast cancer. Not all cancers are genetic, which is irrelevant to the OP, but very relevant to me!)
What I’ve learned from family members who have an inherited risk of cancers from their mothers side is that everybody has the BRCA genes. They produce proteins that help repair damages DNA.
It’s when these genes mutate or have a harmful variant that cancers can develop.
A loved is going through it right now and is waiting on genetic testing for her triple neg breast cancer stage 2 to see if she has a harmful variant of the BRCA gene.
My late wife was diagnosed with Ductal Carcinoma in Situ and had a lumpectomy. My understanding is that a BRCA test should have been done at that time but for some reason it wasn’t (perhaps standards have changed since that happened, around 2010). A few years later she was diagnosed with ovarian cancer. She had the BRCA test at that time and it confirmed she had a harmful mutation. She had chemotherapy but died from complications of the ovarian cancer less than a year after it was diagnosed. If the BRCA test had been done at the time of her DCIS diagnosis, the outcome may have been different. (She had been having mild symptoms of the ovarian cancer for a few months which she thought were gastrointestinal. Her doctor said if he’d known she had a BRCA mutation he would have done more extensive tests when those symptoms appeared.)
That’s a sad outcome I wonder if it’s better today.
My loved one lives in Canada and I don’t know if it’s standard for everyone there but part of her treatment includes the genetic testing as well as a full body scan that looks for cancers/ tumors etc. her scan came back clear, no lymph nodes involved but she’s still having preventative chemo.
She had a lumpectomy and while in surgery also had plastic surgery on the unaffected breast to ensure the girls were symmetrical. It was not something she asked for or thought she even cared about but it was strongly encouraged. I gotta say her boobs look great, uplifted and perky for a middle aged gal.
When I did my online checkin yesterday, one part was a long questionnaire about family cancer history. Just from that, the doctor suggested that genetic testing would be advisable even without knowing of the bad BRCA1 variant.
So, I had blood drawn, and it will be sent to a lab that does a bunch of genetic testing. It’s not clear whether insurance will cover it - they will let me know what the cost might be. I should have results within a month.
My brother told me that this was a more recent study than the one we both did 20 years ago (if it had been from that, presumably I’d have been notified as well if I had the gene).
I will definitely be less cavalier about mammograms in the future in any case!! I’ve already scheduled one for next week.
I’m nervous, of course - chances are quite high of my developing breast cancer by age 65.
The exam today did not indicate any problems, though of course early BC would not be detected that way.
Is that the Galleri test? I had that done about a year ago on my doctor’s recommendation because of my age and family history. Neither Medicare nor my supplemental plan covered it.
I don’t think so. Mine is not to detect cancer itself, but genetic markers such as BRCA1.Supposedly it looks for a number of things. I think the lab is Myriad - I guess it’s not something that LabCorp or Quest does.
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I had genetic testing when I was diagnosed with breast cancer. It was insanely expensive, and my insurance didn’t cover it, but my oncologist hooked me up with a research program that covered the costs.
I do have medical indications (father / brother with prostate cancer, history of loads of colon polyps - had to estimate, but with 10 colonoscopies, at an average of 2 per, that’s 20+ which bumps me into the next tier there). So even before the BRCA1 info, they recommended testing.
From the Myriad web page:
Most patients have complete coverage for genetic testing, and about 90% pay $0 out-of-pocket.
Got a notification from Myriad yesterday, saying “follow this link to find out your cost”.
Turns out, it is covered 100%. I don’t know if it would have been covered as preventive, if I had not hit my out-of-pocket for the year (I assume not). I expect that if my cost was not expected to be zero, I would have to pay up front for them to do the testing.
Supposedly, it will take up to two and a half weeks to do the testing, which would put me at the end of July.
In the meantime, my mammogram came back clear. BRCA1 mutation is not a guarantee I’d get breast cancer, of course, but the odds are quite high I’d have developed it by now, so I’m cautiously optimistic that the results will be negative.
