I thought I’d saunter into the survivorship clinic meeting with the genetic specialist MD and get my blood drawn after a quick consultation. WRONG. I brought the 5 page history form in all filled out, handed it in, was weighed and measured and … sat for too long waiting for the doc. The staff were appropriately remorseful as they told me she’d be 15 minutes late. About 45 minutes later she did come in.
While I was waiting, I looked out to the pond with the fountain as the first rain in several days fell. It was pretty much pouring, and the wind blew the spray from the fountain. It splashed into the windblown pond in various patterns. I love rainy days. To restate the first sentence here, I really didn’t think much about the options that were about to be presented to me. As I was enjoying the rain show, I let my mind wander into the darkness. The purpose of genetic testing, in my opinion, was to see if there were any of the BRCA genes in my body that would determine the likelihood of a reoccurrence of cancer. Just the idea of a reoccurrence and the subsequent treatment options, had me unimpressed. I recalled the initial days of AC, the nausea, diarrhea, sadness, my hair loss, losing my ability to know what was going on in my body, fear of neuropathy, messed up nail beds, fatigue, burned skin…it all sort of flashed before me. It was like I had both the feeling like it was yesterday and so long ago all at once.
Dr. Genetic Specialist came in and reviewed my family history. The only notable cancer that I am aware of was my maternal uncle’s late in life prostate cancer, my paternal aunt’s colon cancer in her 70’s and my dad’s malanoma in his mid 50’s. Unless the malanoma was a particular kind, none of these were of significant concern to her. I don’t know what kind of malanoma it was, I DO know that my dad spent a lot of sunny days on roof tops and building houses without his shirt on, and never had a reoccurrence. She asked if there was any chance that my biological grandparents could have been cousins or if I had Ashkenazi/Eastern European Jewish heritage, neither of which I answered in the affirmative. I’m pretty sure about the Jewish heritage, and mostly sure that my grandparents were not cousins. I suspect I could get into the geneology if I wanted to be sure as much as is possible.
These tests are done by one lab only. They cost something like $3,500. Insurance companies do not always cover the cost. The social worker asked why I was considering this test. Among my reasons was the fact that I have brothers, children, nieces and nephews and that I wanted to give them as much information about my/our genes that was available to us. Another was to make choices about my body that could include prophylactic surgeries to remove the tissue that would be the most at risk (breast, ovaries and tubes). I have a friend whose sister had ovarian cancer. She had her OWN ovaries removed recently to avoid the occurrence of ovarian cancer herself. Seems like a reasonable decision to me. Social worker told me that I didn’t hear it from her, but I should NOT tell the insurance company that I wanted this test to help family members. She asked if I would really consider having another mastectomy and removing my ovaries and tubes if it came back positive.
The catch here was that I did not meet any of the criteria that my insurance company (like most companies) laid out for eligibility. The ONLY thing that remotely put me in the maybe catagory was that I was younger than age 50 when I was diagnosed. That particular bullet said something like “under age 50 at diagnosis AND with two separate tumors”. My tumor had ductile and lobular features, but was considered one tumor.
Enter conundrum flashback. I was told that they could take my blood and send it on to the lab with my insurance and the lab could stop the process if/when they find out that it would not be covered. No sweat off my back. BUT Dr. Genetic Specialist would have to submit a very detailed family history to my insurance company, much much more information than they currently have. It is allegedly illegal for the insurance companies to descriminate after obtaining so much info. It is apparently NOT illegal for LIFE insurance companies to descriminate in this case. And so, what did I want to do?
The thing that could have put me over the eligible edge would have been if there was one other case of breast cancer in my genetic history OR especially if there was ovarian cancer.
At this point I have a DVD she gave me about genetic testing. I plan to look it over. B and I have discussed this and are leaning on the side of not pursuing at this point. Dr. Genetic Specialist is going to talk with Dr. Oncologist. She told me that she is NEVER surprised by a positive genetic test. These individuals have significant ovarian/breast cancer in their families. She is SOMETIMES surprised by negative tests. She gave me a number, something like 7-10% of genetic testing comes back positive for BRCA 1 or BRCA 2. She said that there will most likely eventually be more genes found to be related to cancer, but they just have not been cloned yet. She said that based on my history she thought it would be fairly unlikely that I would test positive for the two genes that are currently identified as linked to breast/ovarian cancer. She did offer a bit of advice. She would recommend that breast screenings start for the next generation 10 years prior to the age I was when first diagnosed…age 37. I can pass that on.
SO anyway. There’s the long genetic testing story. I’m going to watch the DVD, talk with others and sleep on it…maybe for many moons. There is no rush.
E getting instruction from our pal S.
