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Advocacy - A Weapon in the Fight Against Prostate Cancer

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.

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 study.”
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 said. 
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.
 
Caregiving
 
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.
Price 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.”
 
Caregiver Roles
 
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 said.
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?”
 
Doctor-caregiver Relationship
 
It 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 Caregiver.com:

  •  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.

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