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Becoming a Proactive Cancer Patient

Experts explain what newly diagnosed cancer patients need to know to help fight their disease.
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Know Your Information 'Comfort Level' continued...

M.D. Anderson gynecological cancer specialist Charles Levenback, MD, tells WebMD that it is important that patients think about just how much information they want before they sit down with their doctors.

"These days the assumption is that the patient wants to know everything, but some may really only want the big picture," he says. "Or they want more information as time goes on. It is important to communicate this."

It is also a good idea to write down questions before meeting with your doctor. The American Cancer Society web site includes a long list of potential questions which can be found in the "Learn about Cancer" section of the site, under the main heading "Patients, Family and Friends." Sample questions, which can be printed and taken along on doctors visits, can also be found on WebMD.

Another Set of Ears

Patients often benefit when they bring someone along to appointments for support and to act as another set of ears, Levenback says. A friend is often better than a close family member in this support role, because family members are often as upset as the patient.

Christina Koenig of Y-ME recommends bringing a tape recorder to doctor's appointments if all agree that this is appropriate.

At the very least, someone should take notes during appointments, Arnim says.

"I've had people tell me that after the first five minutes they didn't hear a thing their doctor was telling them," she says. "That is to be expected"

Don't Be Afraid to Rock the Boat

Arnim says cancer patients are often reluctant to speak up when they are upset about something, out of a conscious or subconscious fear that their doctors or other medical caregivers will abandon them.

"The tendency when someone is feeling vulnerable and scared is to put up with something rather than rock the boat," she says. "But even though your instincts may be telling you to keep quiet, it is important to speak up."

Rocking the boat also means not accepting everything your doctors tells you as gospel. If you feel the need for a second or even third opinion on any aspect of your cancer care, get one.

This advice is equally true for people who suspect they have cancer or some other serious problem, but have been told nothing is wrong, Kennedy says.

"If a doctor is dismissive or hard to communicate with, or tells you nothing is wrong when your gut tells you it is, you need to find another doctor," she says.

Forty-seven-year-old Julie Gomez learned this lesson the hard way. The Houston woman saw a long line of doctors for a painful stomach problem for almost a decade before her rare gastrointestinal cancer was finally diagnosed.

"I was told I had acid reflux or that I ate too fast," she says. "One doctor did all the right tests, and actually saw something on the scan but told me he just didn't believe it. That was eight years before I was finally diagnosed."

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