From C3 Momentum, Summer 2009.
by Mary Mitiguy Miller
In the course of our lives, many of us will know—and want to help—someone living with cancer. One way to help is to become a “medical advocate” by assisting with the navigation of the medical maze, researching the latest and most relevant treatment information, or wading through the flood of financial and insurance forms.
No matter what the tasks, the mission is to clear obstacles and smooth the path for the person living with cancer.
The advocate might be a close friend or a spouse. Sara Jervis in Washington State married her childhood sweetheart Neil more than 35 years ago. When Neil was diagnosed with stage IV colorectal cancer, there was never any doubt that this marathon runner and Ironman competitor would have the fighting spirit for a hard race against cancer.
“Neil’s got enough to do, battling the cancer,” Sara said, so she handles the details, including sifting through medical reports and online support groups, searching for the next step in their marathon through cancer.
Sometimes the advocate is a totally new acquaintance. Julia Vigue had helped family members through cancer in her small Maine community. When she heard about a young single mother in town diagnosed with advanced colon cancer, she offered to help. Julia became instrumental in Marilia Sardinha’s battle, and now a healthy Marilia returns the favor as C3’s Advocate in Action.
Both Julia and Sara learned valuable lessons about advocating for the best possible medical care:
1. Be the extra eyes and ears
An advocate can really help by taking notes during doctor visits. The patient and family, who are coping with roller-coaster emotions, usually find it hard to absorb information. “I took both of my best friends with us to the doctor,” Sara recalled, “because we knew that Neil and I couldn’t think.” By writing notes or using an inexpensive tape recorder, the advocate can capture information for later review by the patient or family.
2. Get the facts
“Facts are first,” according to Dr. Heinz-Josef Lenz of the University of Southern California who writes a regular C3 blog at www.FightColorectalCancer.org/Lenz. The first step, he stressed, is to write down the exact name and stage of the cancer. As tests are completed, it’s important to learn the cell type, number of lymph nodes examined, and other tissues involved.
The advocate can help generate a list of specific questions before every visit, and be sure those questions get asked. If confusion remains, the advocate can help re-ask the questions.
3. Act as secretary and librarian
Keep notes from doctors’ visits, lists of drugs given and tests performed, written instructions and treatment schedules, appointments and emergency contact numbers in a notebook. Collecting the written records, and making sure that copies are ready for doctors’ visits, can be very useful to the patient. When Julia was seeking treatment options for Marilia, she could quickly FedEx duplicates of doctors’ reports and CAT scans to consultants.
4. Gather, organize and dispense information
The sheer volume of cancer information is overwhelming. The patient must decide how much he or she wants to know, and when. An advocate can gather and organize the tough-to-digest information in stages — statistics, treatment options, side effects, complications — and have it ready when the person is ready to hear it.
5. Offer facts, not opinions
The advocate can filter out the irrelevant and inaccurate information that others offer with the best of intentions. Kate Murphy, C3 staffer and long-time cancer survivor, researcher, and advocate, noted that it’s common—but not usually helpful—to hear “Did you see that TV news story last night about cancer?” or “My aunt had cancer and she got a different medicine…” Murphy’s advice: Know the facts. Offer information, not opinions. And don’t push.
6. You don’t have to believe everything you hear…even from doctors
When reeling from shock, on the brink of despair, or swamped with information overload, it is natural “to rely on the white coat in front of you,” said Julia Vigue. “But the best advice may not come from just that person.” An advocate can point this out later, offering perspective and suggesting more research or second opinions.
7. Get several opinions – and listen to your instincts
Treating colorectal cancer is a multidisciplinary team effort, emphasized both Dr. Lenz and Kate Murphy. “Never depend on one point of view,” Murphy advised. “Get opinions from the whole team—medical oncologist, surgeon, radiologist.”
And listen–beyond the professionals–to your own instincts, added Sara Jervis. When Neil noticed vague fatigue and bowel discomfort, “The first doctor said to just cut back on milk and bran, and not worry about a colonoscopy,” she recalled. That didn’t sound right to her, but only later, when she noticed “a belly” on normally skinny Neil, did they insist on more tests.
8. Ask the hard questions
Even harder than asking about a person’s cancer, can be questioning the doctor about credentials. But it’s crucial information. If patients are uncomfortable asking pointed questions of their doctors, the advocate can do it.
9. Find peers
Sara Jervis sorted through online support groups to find an invaluable advisor who’d dealt with a similar advanced cancer. “Peer experience and advice have a completely different value than my expertise,” Dr. Lenz wrote in his C3 blog. Peers provide not only emotional support but also the honesty needed to find the best treatment or doctor for the best outcome. “Some of these are only possible when patients help each other,” he said.
10. Walk alongside, wherever the patient decides to go
Friends and family who’re coping with their own emotions might miss hearing the quietly spoken (or unspoken) wishes of the person actually living with the cancer. An advocate listens carefully, walking alongside but always letting the person with cancer choose the path and set the pace.
