Flight Attendant with a Scalpel
I met with the genetic counselor today for about an hour and a half. She had the 22-page questionnaire I filled out and she had started drawing a genetic family tree. She asked me more questions and made notations. Based on my history, she said we certainly had cause to do genetic testing, but that she needed to talk to me before we went ahead. Not everyone truly wants to know their genetic status. In addition, they want to get an idea of how you think it might affect you if you found out you were a carrier.
I told her that I had done a lot of thinking about what I might do and I believed that if I was a gene carrier, I would decide to get my ovaries removed (oophorectomy) to reduce my ovarian cancer risk and do surveillance on my breasts (instead of getting a preventative bilateral mastectomy). Beyond that, I'd be concerned about my brother and sister and what it would mean to them.
After giving me more background on the genetic mutations and surgery designed for cancer prevention, she talked to me about my family. She wanted me to know how they would want to proceed with my family if I test as positive. Because UCSF is a teaching/research institution, I was enrolling in a genetic testing program. She said they would want to talk to my brother and sister and potentially test them for the mutation (because if I was positive, they would have a 50% chance of also carrying the mutation...and if they were positive, their kids would each have a 50% chance, so it would matter a lot to them). I was worried because for me they have to test the entire gene sequence for two genes, which costs $2800. I didn't want to put that kind of financial burden on my siblings. The counselor said that once they know my mutation, family members get tested for the specific mutation only, which is much, much cheaper. In addition, they have research scholarships that are available when needed.
She gave me forms to fill out to get medical records and other information for relatives who are no longer living. I still need to continue research to try to fill in the family tree some more on my mother's side. For example, there is a rumor that one great-great-aunt had breast cancer and her sister had ovarian cancer, but we need some documentation on that. I'm not sure how I will get everything they want, but we'll see.
I had my blood drawn for the test, donating an extra vial to research and banking another one for my family, in case they ever want to have it tested for something new. I felt really centered and like I knew what I was doing.
And then I went to see the surgeon...so much for feeling centered.
The surgeon came in with two residents following close at her heels. She told me that the biopsy I had done on Friday did not show cancer, but it showed atypical cells. Based on that, she wants to do a surgical biopsy on that breast to take a closer look. She asked if I saw the genetic counselor and I said yes, and I we took blood for the genetic test. The surgeon suggested we wait the five weeks it takes to get the results before we scheduled surgery, so that I'd have the option to choose preventative mastectomy if it is positive.
I said, "Actually, that's not what I plan to do if I'm positive." I told her my plan. She looked me in the eyes and said, "I want to be sure you understand that if you are a gene carrier, you have a 50% chance of getting breast cancer again." I told her I knew that, and I was prepared to do surveillance, but right now I wanted the lumpectomy as soon as possible.
There was an silence and suddenly I felt very uncomfortable. I got the message that I had made the wrong decision. After a moment, though, she brightened up, put on a smile, and said, "Well, even if we do the lumpectomy, that doesn't mean you can't get a mastectomy later on. In fact, we can take your ovaries at the same time!" She beamed a smile at me, clearly happy that she found a solution.
I replied, with a cynical drawl, "One fell swoop, eh?" One of the residents cheerfully offered, "One-stop shopping?"
Am I the only one horrified?
She scheduled me for surgery on April 21st. That will be for a lumpectomy on the left breast, a sentinel node biopsy on the same side, and a surgical biopsy on the right breast. Because it's difficult for her to feel the lump, she said they'd do a wire localization beforehand. That's where they insert a thin wire into the breast, to guide the surgeon to the exact spot. She'll have that done on both sides the morning of the surgery.
Just before she left the room, I asked her what kind of cancer it was, so I could fill out the lab form. She flashed me a bright smile and said, "Stage one, invasive cancer!" as she left the room. I almost expected her to add, "Buh-bye now!" and do a cheerful wave.
I came out of the appointment tense and unsettled. Kathy said, "Your surgeon is a surgeon. That's what she does. Of course she'll want to solve things with surgery." She's right.
Ultimately, though, this is my decision, and I have to follow my intuition whether or not it's unpopular. After all, none of us can know what will happen in the end.
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