by Liza Berger
Jan Manarite’s husband, Dominic, has been
living with prostate cancer for more than nine
years. And that is in large part due to her
advocacy efforts, she does not hesitate to
admit.
“I continue to get all his medical records,” said
Manarite, who is the Florida educational facilitator
for the Prostate Cancer Research Institute (PCRI),
which is based in Los Angeles. “I’ll get a
highlighter and highlight the important words.”
Manarite, who joined PCRI after her husband became
sick, represents one of thousands of prostate cancer
caregivers across the country. Advocacy is a
critical part of a caregiver’s role with this
illness, she asserts.
“I would argue that you need a scientific
advocate,” she said. “But you don’t know who it is.
I would say watch for who it is and let them be the
advocate when they have surfaced.”
Manarite didn’t expect she would be that person,
she says. When her husband was diagnosed, his cancer
was in every bone except his arms and legs, she
said. His level of PSA (prostate-specific antigen)
was more than 7,000, a sign that the cancer was in
an advanced stage. (The PSA test, along with a
digital rectal exam, is used to detect prostate
cancer in men 40 and older.)
A few months into his hormone therapy, she became
concerned about his bone health. She started
researching and learned that the therapy suppressed
hormone levels and put him at risk for fracture and
osteoporosis. Drugs known as bisphosphonates, she
found, help to build bone. She learned about Aredia,
a bisphosphonate, which was approved to prevent
osteoporosis in those with breast cancer and
possibly prevent bone metastasis. It was not part of
the protocol for prostate cancer. She asked the
doctor about it and received the necessary approval
from the doctor and the insurance company.
“It was a critical addition,” she said of the
medicine. Since that time early on, she says, she
has been involved in making all of the treatment
decisions for Dominic, whose cancer is now under
control. She and the doctor work together, and, of
course, Dominic has to approve it. “I’m
usually the one who suggests it,” she says of
treatments. “I can’t remember the time it wasn’t
me.”
Trial and error
Prostate cancer may be unique among other cancers
because of its lack of level one evidence, according
to Manarite. While many studies involving thousands
of women have been conducted on breast cancer, the
same has not been true with prostate cancer. As a
result, the treatment protocol is not as clear, she
said.
“You will choose the treatments eventually,”
Manarite said.
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