First, a word on genetic testing. I understand that it was previously much more expensive than it may be now. My insurance covered it (with a copay) but the literature I received states “If you don’t have insurance or prefer not to bill your insurance, you have the option to pay $250 for your hereditary cancer genetic testing.” KCBC took my blood and sent it to Invitae.com, the lab that processed my samples.
Based on the puzzled questions asked of me by numerous nurses and doctors, I assume most people who opt for this testing do so because of family history. As I mentioned in my previous post, that was not my case. I would think it reasonable to assume that anyone can have these tests done, though everyone I’ve spoken to thus far has indicated that my circumstances are highly unusual.
A simplified explanation of what my diagnosis means is that I have an increased chance of developing breast, ovarian, fallopian tube, peritoneal, pancreatic and melanoma cancers. Men with this gene also have an increased risk of prostate cancer. My children have a 50% chance of having already inherited BRCA2. Should they opt for testing and should they test positive, there other implications for their children that they will need to consider prior to conceiving.
Each type of cancer comes with varying levels of risk of developing during specific years of ones’ life as well as differing percentages for lifetime risks. Ultimately, though, those statistics mean less to me than other factors. My friends’ experiences battling cancer and what I understand about current medical limitations compel me to consider all options. The nurses and doctors I’ve talked with so far have all emphasized the importance of focusing on preventative measures – screening and prophylactic surgeries.
So far, my biggest challenge has been navigating the medical system since multiple types of cancer will require multiple types of doctors. During my call with the genetics counselor, I asked what doctor typically serves as a “team lead” or overall manager of care. She suggested that my family physician or a cancer-specific treatment center might fit the bill.
I immediately met with my family physician who immediately ruled herself out for the role. She did provide a referral to an oncologist at a local cancer center. I scheduled an appointment with that doctor only to cancel it after reading frightening reviews about her.
I then went to meet with my gynecologist but had to meet with someone else at the same practice because mine was no longer seeing patients. Within a few minutes of meeting, the new guy recommended removing my ovaries and fallopian tubes. I asked about the pros and cons of removing my uterus. He talked very fast and was hard to follow, so I had to ask him to slow down. He quickly dismissed the notion of removing my uterus and made it sound like the surgery he was proposing was a fairly simple procedure and the most obvious solution to avoiding ovarian cancer since I was already approaching menopause. Anxious to get things moving along, I agreed to schedule the surgery for three weeks out.
In the meantime, I scheduled an appointment for the following month with a breast cancer specialist recommended by the fast-talking gynecologist (though this, too, may change).
I then reached out to the gastroenterologist with whom I’d scheduled my colonoscopy via a referral from my family physician during my annual exam. We are scheduled to meet this week to discuss pancreatic cancer. He has already indicated he’d like to order an MRCP MRI and take blood for CA 19-9 & CEA tumor marker tests. Apparently, these tests are usually used after a cancer diagnosis but can, in some cases, detect precursor proteins prior to diagnosis.
After sharing my diagnosis on social media, I was contacted by a friend who’d gone through all of this 10 years ago. We spoke at length and I decided to cancel the first surgery and instead meet with a specialist she had recommended. My initial call with his nurse was tremendously encouraging and I will meet with him this week as well.
It has been a month since I first learned of my diagnosis. It feels like a lot longer. This is and will continue to be the ultimate test of my inner control freak’s patience. Some days are heavy, some are light. God is with me regardless.
Trina Baughn 