| By Sue Friedman, Founder and President
FORCE: Facing Our Risk of Cancer Empowered
Randy (not his real name) is a 55-year-old man and a carrier of
a BRCA2 mutation. The inherited mutation in the BRCA2 gene, detected
with a blood test, can greatly increase the risk for breast or
ovarian cancer in women and can be passed down from parent (father
or mother) to child. Randy talks about the effect this discovery
has made in his life.
Q: How has cancer impacted your family?
A: Cancer has always been a part of our life. My mom died of breast
cancer. My grandmother died of ovarian cancer in her 80s. My uncle
had colon cancer. And three of my four sisters have had breast
cancer. We grew up surrounded by cancer.
Q: When did you find out that you carried a BRCA mutation?
A: I found out in October— I went in because three of my
four sisters had already had breast cancer and my mom died of it.
One of my sisters who had breast cancer twice had been in a research
study and had learned a lot about this hereditary syndrome. She
is the one who urged the rest of us to do more research—she
was concerned about me because I have daughters.
Q: What was the process of genetic testing like? How did you decide
to get tested?
A: First I attended a group genetic counseling session that was
open to the community. There were three other guys and 25 women.
In the group session, they spoke about genetic testing and options
for lowering risk and showed a video with women who had chosen
different paths. One woman had chosen to remove her healthy breasts
and ovaries to lower her risk for cancer. One of the most important
things I learned is not to be judgmental about the decisions people
make. It’s easy to sit on the sidelines and judge.
After the group session I had a private session with the genetic
counselor. She was fabulous. I learned a lot. For instance, I hadn’t
realized the difference between risk for cancer in the general
population versus those with BRCA mutations.
Q: When you learned about prophylactic surgery (see sidebar) in
the group session, did you think this might be an option your daughters
would consider?
A: At that point it hadn’t entered my mind that I might test
positive for the mutation, so at that point I hadn’t considered
the options with respect to my daughters.
Q: What were your thoughts when you received your results that
you carry a BRCA2 mutation?
A: When I received my results, my jaw dropped. I was caught off
guard. I have always been healthy and figured I’d be OK.
One of my first thoughts was, ‘What about my girls?’ I
went through a whole range of emotions over two days—anxiety,
fear, guilt.
Q: How old are your daughters?
A: One is 28 and the other is 25.
Q: Have your daughters had a genetic test?
A: My older daughter was tested first. I was there when she received
her [positive] results. Everyone fell apart. I went through terrible
guilt. I still feel guilty for having burdened them. It took me
a long time to work through it. A few months later my second daughter
tested positive. In a way she seemed relieved that now they could
go through it together and support each other. I’m happy
that both were active and involved with getting information about
their cancer risk.
Q: What steps, if any, have your daughters taken to lower their
risk for cancer?
A: My older daughter chose bilateral mastectomy. I called it the "best
of bad choices." She seems to be OK with her decision. My
younger daughter isn’t married and has no children yet. She
hasn’t had surgery but she has had a baseline mammogram,
two CA125 tests, transvaginal ultrasound, and has enrolled in a
research study.
Q: Have you changed anything about your lifestyle since having
the test?
A: I immediately went and made appointments with my doctors. My
genetic counselor forwarded my genetic test results to my primary
care physician who ordered appropriate screening tests. I’m
paying more attention to my health. Recently I had a red spot on
my cheek removed and it was a basal cell tumor. My doctors take
my concerns seriously because I make them take it seriously.
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