The first doctor I had the displeasure to meet with was an oncologist. I happened upon him after months of back and forth conversations with my primary care doctor and my insurance company, explaining to them what BRCA testing is and why I need it. You would be amazed and how little education there is in the medical community about BRCA. Nobody ever knows what it is and I find myself explaining it to doctors and nurses constantly. It really upsets me that its so unknown, yet so important. Anyway, back to the awful oncologist.
I met with him to get my BRCA blood test done. Its a simple blood draw, and it takes weeks for the results to come in because only one lab in the country does the test (Myriad, in case you're wondering). My insurance didn't cover the test, so it cost $400 payable directly to Myriad. When I got to the oncologists office, they immediately did my blood draw and then made me sit in an exam room for half an hour before the doctor came to see me. I was scared and nervous and alone and had no idea what he was going to say to me. I thought he'd be nice and sympathetic and try to make me not worry so much. I was never more wrong in my life!
He was an older man, and very sexist obviously. He immediately wanted to know where my husband was (at work) and whether I had children. He then went on to ask me whether I breast fed (no), and then chastised my choice and told me that I should have and that it is known to reduce breast cancer risk (let me just say that after this conversation I did extensive research. Breastfeeding only slightly reduces the risk, and since I am BRCA +, it wouldn't do a damn thing for my risk. He was wrong and rude and arrogant about it. Don't believe everything the doctors tell you). He also told me that if my test came back positive he recommends that I have another baby as soon as possible and breast feed for as long as I can (!!!). When he concluded the meeting, after brushing off all of my questions, he told me this is a terrible situation and he feels really bad for me and my family. After I left that appointment I called my mom and cried in my car for about ten minutes before I headed back to work. He made me feel like it was all my fault and I was destined to die from breast cancer. He was awful and I will never go back to that man again.
Several weeks later, I got a phone call at 8 am from this lovely doctor. He said, "Well, I have bad news, you're positive for this thing. It's really terrible. You're going to need to get some surgery done, so you'll have to set that stuff up. Call my staff at some point and set up an MRI too." That was all. No further explanation, no empathy.
It took me a few months to come to terms with these results. I shared the news with people, who (as I said in my previous post) were less than supportive, and I thought about my options a lot. It was a lot more emotional than I was prepared for, and I wish I had known then what I know now about the different doctors I could have seen. There are genetic counselors who perform these tests, and offer you counseling and support groups and provide resources and information. There are breast specialists who are very familiar with this test and condition and they're experienced in helping previvors navigate this process. I think my first steps in this journey were harder than they should have been because I was not aware of the resources available to me. I only hope that the understanding of BRCA becomes more known in the medical community, so others in my position don't have to face the same unpleasant process I had.
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