Denied BRCA Testing, adopted

I am also adopted but was not tested for BRCA until after diagnosis.  I have zero access to any family history.  Being adopted does not make you "high risk" it only makes you unaware of your risk.  Unless you can provide history of close family being diagnosed, or early onset info for those relatives, you do not fit the testing criteria as it is currently used by both physicians and insurance companies.  Changing insurance companies will not increase the likelihood that the test will be covered.

I'm feeling for you as not knowing is frustrating. I could qualify for the test if my aunt had it in BOTH breasts...but she only had it one. With both of my parents gone (in their 60's) info is hard to get...and cancer for older generations was not talked about. How can you prove family history if you can't access it???

Rhondalynn,

Not to be nosy, but how old are you? I was diagnosed at 46, and even though there's not much cancer in my family (we're a high BP/stroke family), my MO was able to get BRCA covered by insurance. She pointed to some guidelines about women under 50, and insurance caved.

Yeah, being adopted itself does not make you high risk. BRCA mutations are actually very rare. For example only about 10% of breast cancers are hereditary related (ovarian cancer has a different rate, but I am not sure of it), and of those only about 25% are due to BRCA mutations. The majority of people who test, even with a known strong family history, and even if they DO have a cancer diagnosis, but no known BRCA-mutation in the family, still test negative. I HAVE a strong family history of pre-menopausal/aggressive breast cancer and had to fight a bit to get tested (as my mother, who does have a cancer diagnosis, would not test at the time and they prefer to test someone with a known diagnosis first) and I was still negative for BRCA mutations (I was still considered high risk for breast cancer due to my known family history).

Do you have any other indicators of risk, like any pre-cancerous conditions?

You certainly can look at doing out of pocket testing, that is what I essentially did as the wait here for covered testing (universal healthcare) would have been at least a year (it actually would have been longer, as I got the call from a GC in respect to testing here more than 1.5 years after I started the process...and months after I already had my PBMX). I already had had prior genetic counseling and been told I was high risk, and that testing would be appropriate, and so took those results and found a GC across the border in the US who gave me a second genetic counseling appointment/riskassessment and the testing, as I qualified on the risk assessment/threshhold used for referring for genetic testing. I went through Ambry and yes it was something like $3,000+ USD. However, I still qualified for that testing based on my risk factors, I am not sure that you can at this point just pay for testing even if you can't show strong risk factors/threshold of likelihood of having a BRCA-mutation.

I have also recently been denied for testing because I am adopted with no access to my medical history. I went through the process of getting a subpoena for the medical record portion of my adoption records a few years back only to find them virtually blank - I guess the hospitals in the early 1970's were not overly concerned with recordkeeping back then. So, in my case, there is no history to be found.

I am now 42 years old. I have undergone surgery for what they thought was appendicitis but was rampant endometriosis, I have had multiple benign ovarian cysts and have gone through several breast biopsies to "benign but let's monitor" results. I was essentially told I would need a positive result for myself to be qualified for testing since I have no positive history to present. That has to be one of the saddest things I have ever heard.

I'm under the impression that the BRCA test is <$500 and that the Oncotype test is the $3,000 one???

Have you called the lab directly? There was a new law last year that we can go directly to the lab and order our own tests and pay out of pocket,

My surgeon paid for my test when insurance would not.

BRCA: to see if you have a genetic mutation that causes a predisposition for breast/ovarian cancer

Oncotype: to estimate risk of recurrence of early-stage, hormone-receptor-positive breast cancer

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