Becoming a Proactive Cancer Patient
Approximately one out of every two American men and one out of every three American women will have some type of cancer at some point during their lifetime, according to the American Cancer Society.
This year almost 1.4 million Americans will hear the words "You've got cancer," and in that instant their lives will be forever transformed.
Bianca Kennedy heard them five years ago, and, like most people, her initial emotion was shock, followed by the question, "Am I going to die?"
Kennedy, now 40, was diagnosed with early breast cancer when her then 38-year-old sister was battling the disease for the third time.
"My sister was grossly undertreated the first two times, and I learned from her experience," Kennedy tells WebMD. "When I was diagnosed I didn't agonize about how aggressively to treat my cancer because I had seen what she what she went through."
Read WebMD's "Newly Diagnosed with Cancer? Start Here"
What Should You Do?
Kennedy ended up having both breasts removed, followed by chemotherapy and breast reconstruction. She now counsels newly diagnosed patients as a volunteer for Y-ME, a 24-hour support hot line staffed entirely by breast cancer survivors.
She knows firsthand the importance of being an involved, educated patient, but she says most people need time to come to terms with their diagnosis.
"It is common for people who have just been diagnosed to be overwhelmed with all the information they are getting and the choices they are being asked to make," she says. "You are bombarded with facts and figures and statistics, and it is really hard to keep a cool head. But the choices you make are critical and they may impact the rest of your life."
So what are the most important things newly diagnosed patients can do to maximize their odds of beating cancer? WebMD posed this question to doctors, patient advocates, and cancer survivors, and some common themes emerged. They included:
Get the Facts
Everyone interviewed for this story agreed that education is critical. That means learning all you can about the specifics of you own cancer and how to best treat it. This is especially important for diseases like breast cancer and lymphoma, where treatments vary greatly.
"I have seen people waste a lot of precious time researching the wrong thing because they didn't really understand their cancer," says Joan Arnim, who manages the patient advocacy program at Houston's M.D. Anderson Cancer Center. "It is often a good idea to ask your doctor for recommendations about where to get information about your particular cancer."
Know Your Information 'Comfort Level'
While some patients go into overdrive learning all they can almost immediately, others either don't feel comfortable doing this or don't want to know too many specifics.
Internet-savvy family members or friends can be called on when patients can't do their own research.
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"
Read WebMD's "Most Cancer Survivors Keep Working"
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."
Read WebMD's "Many Americans Believe Cancer Myths"
Talk to Other Patients
Gomez has had four surgeries to remove gastrointestinal tumors in the 10 years since her cancer was diagnosed, and she may face more in the future if the tumors target her liver or grow big enough to block her intestines.
She now volunteers at a telephone hot line run by M.D. Anderson that matches cancer patients with people who have had the same diagnosis or treatment.
"My cancer is so rare that I didn't meet another person who had it until five years after my diagnosis," she says. "It was very, very lonely."
Gomez now talks to at least one person a week with her disease in her volunteer role, and she believes this is one of the best things patients can do to learn about their illness.
"The Internet is a great learning tool, but it can also scare you to death," she says. "The statistics, especially, can be misleading. They may tell you survival for your disease is less than five years, for example, but if most people with your cancer are diagnosed in the 60s and 70s and you are in your 30s, that may not apply to you."
Tools You Can Use
The M.D. Anderson hot line can be reached by calling (800) 345-6324. All cancer patients or their caregivers are eligible to call. The Y-ME breast cancer support hot line can be reached in English at (800) 221-2141 and in Spanish at (800) 986-9505. Interpreters are also available in 150 other languages.
The American Cancer Society (www.cancer.org) and the National Cancer Institute (www.cancer.gov) both operate comprehensive web sites that include information on cancer treatments and clinical trials, as does WebMD. The information hot line number for ACS is (800) ACS-2345 and the number for NCI is (800) 4-CANCER.
The ACS offers a service to patients and their families that will help match them with clinical trials in their area. To find out about this service call (800) 303-5691 or click on the section entitled Emerging Medical Clinical Trials Matching Service on the ACS web site. You can find out about cancer trials through the NCI at the web site www.clinicaltrials.gov.
The ACS web site also offers a service to help patients understand their treatment options, says spokesman David Sampson. To access the service click on "Using Treatment Decision Tools" on the group's home page.
By Salynn Boyles, reviewed by Brunilda Nazario, MD
SOURCES: American Cancer Society web site. National Cancer Institute web site. Christina Koenig, communications director, Y-ME Breast Cancer Organization. Bianca Kennedy, Y-ME hot line volunteer. David Sampson, director of media relations, ACS. Charles Levenback, MD, deputy chairman, gynecologic oncology department, M.D. Anderson Cancer Center, Houston. Joan Arnim, manager, patient advocacy program, M.D. Anderson Cancer Center, Houston. Julie Gomez, cancer patient, hot line volunteer, Houston.