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
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
“You will choose the treatments
eventually,” Manarite said.
Research has not progressed as much with prostate
cancer as breast cancer because men do not want to
enter studies, confirmed Dr. Otis Brawley, chief
medical officer for the American Cancer Society.
“There’s something about men,” Brawley said. “They
know what they want. They don’t want to go into a
He later added, “It’s a very ‘man’ thing
to not want to give up that control … over deciding
their destiny and what kind of treatment they should
get,” he said.
Because of the lack of research,
doctors do not yet know which patients with
localized prostate cancer should be treated and
which would be better left untreated, he said.
(Localized cancer is cancer localized to the
prostate. Metastatic cancer, which Dominic had, is
cancer that has spread to other parts of the body.)
While prostate cancer is the most commonly diagnosed
cancer for men over 65, data has found that
approximately 70 percent to 90 percent would be
better left untreated, he said.
“The majority of men who are diagnosed with
localized cancer don’t need any treatment,” Brawley
Men with localized prostate cancer
can choose from the options of radiation therapy,
surgery, external beam radiation therapy or a
freezing of the prostate, known as cryosurgery.
Those who have metastatic prostate cancer are
treated with hormone therapy and chemotherapy
following that, he said.
While those with localized
prostate cancer do not require much caregiving,
patients with metastatic cancer do, according to
Brawley. The most important task for a caregiver is
to pay attention to the patient’s nutrition,
hydration and cleanliness. Patients should receive
the proper amount of liquids and foods a day. They
should not become dehydrated. Moving them every four
hours is also critical to prevent pressure ulcers.
Incontinence is a major issue for caregivers, he
said. Men who undergo a radical prostatectomy, or
removal of the prostate, are more likely to have
impotence and incontinence. Incontinence is a top
reason why people are admitted to nursing homes.
Intensive treatment also affects intimacy with a
partner who doubles as a caregiver, said Diana
Price, managing editor of Omni Health Media, a
subsidiary of CancerConsultants.com, a developer of
oncology Web sites and their content.
suggests, “There are a lot of proactive things you
can do as a partner and caregiver. Learn as much as
you can about the specific diagnosis and treatment
so you know what to expect along with the partner.”
Effective caregivers have three roles, according to
CancerConsultants.com. They serve as advocates for
their patients, they understand patients’ need to
socialize, and they become familiar with insurance
and financial matters. “Caregivers become part
advocate, nurse, organizer and financial analyst in
addition to maintaining other responsibilities,” the
Web site said.
Caring for someone with a life-threatening
disease can take a toll emotionally and physically.
That is why taking care of yourself is paramount,
Price said. Feeling your emotions—whether it is
fear, anger or guilt—is part of the process, Price
Depression can be common among caregivers,
and they should seek professional help immediately
if they are experiencing signs of depression,
according to CancerConsultants.com.
Reducing stress may be the most important part of
self-care. It’s first necessary to identify sources
of stress, such as having too much to do, feelings
of inadequacy, and the inability to say no,
CancerConsultants.com says. Then you have to
identify what you can and cannot change, and accept
it. Finally, take action. Carve out personal time
for yourself to do what you like. This could be
exercising, meditation or talking to a good friend.
Setting goals over the next three to six months
helps you to decide what you need for yourself, the
Web site says. Objectives could be feeling healthier
or taking a break from caregiving. Action steps
could be walking three days a week or making an
appointment to see the doctor for a check-up.
Accepting help from others, whether it is a
family member, friend or professional is a good way
to help ease a caregiver’s stress. Asking for help
is a sign of personal strength. But don’t wait until
you are too overwhelmed or exhausted to ask them.
When making a request, use “I” statements to make
specific requests. One example is, “I would like to
go to lunch with a friend on Saturday. Would you
stay with Dad from 12 to 2?”
also helps to be a team with your healthcare
provider, as Manarite did, to find the best
treatments for the cancer. The relationship should
also help the caregiver with his/her health needs.
It is important to be assertive and use good
communication skills. Here are a few tips from
- Prepare questions ahead of time. Make
a list of your concerns, problems and issues.
- Make sure the appointment meets your needs.
The first appointment in the morning or after
lunch or the last appointment of the day are the
best times to cut your waiting time and
accommodate numerous questions.
- Use assertive communication and “I”
messages. For example: “I need to know more
about the diagnosis; I would like to know what
the best options are, and why.”
Manarite believes that advocates should always
get copies of the medical records. Patients are
entitled to copies. She offers a recommendation she
learned from experience: Get the record when you’re
sitting with the doctor. Don’t wait for the nurse or
receptionist to secure one for you.