Every step of this process is really a best choice.
1. Deside For Yourself
Some people delegate their cancer care entirely to their family doctors or to an oncologist and prefer not to learn much about their cancer. Others delegate their care but ask their doctors to keep them informed. Still others form a partnership with their doctors and other practitioners and are deeply involved in decision making about their care.
“Everyone deals with cancer their own way,” Dr. Lerner says. “If you get cancer and want to join a support group, take herbs, or go for long walks on the beach, fine, do it. But when people you care about get cancer, they need to make the decisions. You can offer suggestions, but if they choose paths different from the one you would choose, it’s usually best to support their decisions.”
2. Organize Your Social Support
When you’re diagnosed with cancer, you typically feel swept up in an emotional whirlwind. The same thing happens, to a lesser extent, to your family and friends.
When you decide what you want to do and how you want to spend your time, ask a few people close to you to handle the other chores, advises Anne Simons, M.D.
“The period right after diagnosis is emotionally the hardest,” says Mary Jane Massie, M.D., a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York City. “For those who have always been self-reliant, it can be difficult to ask for help or accept it. I tell people: ‘It’s okay to be a little selfish and ask for what you need.”’
3. Consider a Support Group
Beyond support from those you know, joining a support group can provide tremendous comfort-and might even extend your survival. In the late 1970s, Stanford psychiatrist David Spiegel, M.D., now a professor of psychiatry and behavioral sciences and director of the Psychosocial Treatment Laboratory, theorized that support groups might help people cope with the stress of having a life-threatening illness.
In his research with breast-cancer patients, Dr. Spiegel discovered that the women who joined a support group lived almost twice as long as those who didn’t.
To find a support group near you, ask your family doctor or oncologist for referrals to the cancer resource organizations in your community.
4. Get The Pathology Report in Writing
When a doctor suspects cancer, the lump or some cells in the affected area are removed. This surgical procedure is known as a biopsy. The suspect tissue is placed on slides, and the cells are examined under a microscope by a pathologist. If the cells are cancerous, the pathologist writes a report that specifies which type of tumor you have.
From the biopsy, the pathologist can also ascertain what stage the tumor is at and how aggressive, or fast-growing, it is. If the tumor is early-stage, the cancer is confirmed to one area. Moderately metastatic means that it has spread somewhat. Advanced means that it has spread to distant parts of the body. The lab report may reveal other tumor characteristics as well.
“All treatment decisions follow from the pathology report,” says Thomas Grogan, M.D., professor of pathology at the University of Arizona Cancer Center in Thcson. “You need to be very clear about it. Get your pathology report in writing, and make sure that you understand what it says. Ask your doctor. If you still have questions, ask the pathologist.”
Because all treatment decisions are based upon the pathology report, it’s crucial that it’s correct. The best way to be sure is to request a second opinion on your slides. This implies no mistrust of your pathologist, just a need to be sure that the report is correct.
5. Gather Information
Once you’re certain which specific type of cancer you have, it’s time to research it. A great deal of information is only a few phone calls away.
Contact your local office of the American Cancer Society. This private, nonprofit education and research organization can provide you with general information about your cancer. The ACS can also refer you to cancer resources and support groups in your area. In addition, the ACS Reach to Recovery program can put you in touch with survivors of your specific cancer, who can share their experiences of treatment and recovery.
Contact the Cancer Information Service. A program of the National Cancer Institute (NCI) in Bethesda, Maryland, the
Cancer Information Service (CIS) provides current information about all cancers-for free. Two types of information packets are available: one for patients that contains basic background information and another for physicans that contains state-of-the-art treatment recommendations.
Investigate on the Internet. If you have a computer and modem, the Internet contains a wealth of information about cancer. “Using any search engine, just type in your specific type of cancer, and you’re likely to get hundreds of listings,” says Tom Ferguson, M.D., adjunct associate patner at skin-disorders.net and professor of human consumer health informatics at the University of Texas Health Science Center at Houston.
6. Understand Survival Statistics
Survival statistics provide a “big picture” look at your cancer, the odds that someone with your disease will live at least 5 years. But overall survival statistics are misleading because they are averages that include cancers diagnosed at every stage of development, from very early to far advanced. As you might expect, the odds of survival are reduced if cancer is diagnosed at a late stage. For example, if malignant melanoma has metastasized by the time it’s diagnosed, 5-year survival is only 12 percent. But if it’s caught early, the survival rate is 96 percent. Because other cancers also follow this pattern, the ACS and NCI promote frequent cancer screening for early detection.
7. Take Time to Make Decisions
After being diagnosed with cancer, many people are very impatient to begin treatment. They are filled with anxiety, and they don’t want to waste a moment for fear that their cancer will spread.
This feeling is understandable-but uninformed, Dr. Dougherty explains. “By the time cancer gets diagnosed, it’s usually been growing for several years. Except for a very small number of extremely aggressive cancers, waiting a few weeks has no effect on survival. In fact, you should take some time to research your options and get a few opinions on treatment. You don’t want to dawdle, but I encourage patients to take up to a few weeks to consult experts and plan their treatment.”
8. Consult An Oncologist
According to NCI estimates, only about one-third of cancer patients ever consult oncologists. Some don’t want to offend their family physicians by consulting other doctors. Others simply don’t know about specialists in nearby clinics or hospitals.
No good family doctor gets offended when people who have been diagnosed with cancer ask for referrals to oncologists, Dr. Simons says. “I’m a family doctor. I refer patients to specialists all the time,” she points out.
If your doctor balks at referring you to an oncologist, Dr. Grogan says, “You’ve got the wrong doctor.”
As for access to cancer specialists, there are oncologists and hospital cancer programs from coast to coast. This is where the ACS Reach to Recovery program can help. Ask other people who have survived your cancer to tell you who they consulted. Pay special attention to any oncologist who’s affiliated with a comprehensive cancer center or an oncologist who trained at one.
9. Organize Your Doctors
Before you decide on a treatment program, you may need to consult quite a few doctors: your family physician, a medical oncologist, a radiation oncologist, a pathologist, and a surgeon.
It’s best to think of your treatment plan as a team effort. You-or the key support person you designate-are captain of your
team. Dr. Simons offers these suggestions for coordinating your team effort.
Don’t abandon your family doctor. The oncologists you consult may know more about treating cancer, but they don’t know you and your family as well as your family doctor does.
Jot down what every specialist recommends. Or tape-record their recommendations. You need to know not only what kind of surgery, radiation, or chemotherapy they recommend but also the order in which these treatments should be administered.
Ask the specialists to talk with each other. If disagreements arise, urge your oncologists to work them out. They may not talk to each other if you don’t insist.
10. Get Several Opinions
You need to feel comfortable with the treatment program you choose. Cancer experts agree that before deciding on treatment, it’s best to consult several surgeons, radiation oncologists, and medical oncologists.
But what if you don’t have the energy to call oncologists all over the country? You might ask a support person to do this for you. Or you might simply consult one of the nation’s approximately 100 multidisciplinary Second Opinion Panels. Today, every major metropolitan area has at least one of these panels.
You send your medical records to the panel coordinator, who forwards them to local cancer specialists. These specialists have volunteered to serve on the panel. You attend a meeting with all of the experts, bringing along anyone you want. The experts discuss your case and develop a consensus set of treatment recommendations.
To find the panel nearest you, contact the R. A. Bloch Cancer Foundation, The Cancer Hotline, 4410 Main Street, Kansas City, MO 64111.
11. Use Mainstream Treatments
Conventional oncology has a great deal to offer. “When it comes to curing cancer, mainstream oncology has a better track record than anything else;’ Dr. Lerner says. “Every cancer patient should work with an oncologist.” He feels so strongly about this that no one is admitted to his Cancer Help Program unless they are under an oncologist’s care.
12. Try a Clinical Trial
After promising new cancer treatments have been thoroughly tested in animals, they must be tested on human cancer patients before they can be approved for general use. Of the more than 1 million Americans diagnosed with cancer each year, only 20,000 to 30,000 enroll in these tests of the latest treatments.
Clinical trials were once conducted only at the nation’s regional cancer centers. But to open them up to all Americans, the NCI now encourages participation by oncologists everywhere. Even family doctors are informed about trial programs. “No one is excluded simply because they live in a rural area,” says Jeffrey Abrams, M.D., a research scientist in the NCI’s Cancer Therapy Evaluation Program.
To obtain descriptions and eligibility criteria for the approximately 1,500 clinical trials now in progress, ask your oncologist or contact the Cancer Information Service.
13. Use Healthy Strategies
For cancer therapy, the same approaches that help improve your overall health can also help slow the advance of cancer. These include nutritional enhancement and supplementation, exercise, psychological support, and stress management through deep relaxation.
Dr. Lerner wholeheartedly endorses the health-promoting alternative approaches. “If you’re eating well, getting regular moderate exercise, enjoying psychological support, and working to manage your stress, you become a healthier cancer patient,” he says. “Healthier cancer patients often respond better to conventional care and have better treatment outcomes-better quality of life and longer, healthier, disease free survival.”
14. Consider Herbs and Acupuncture
A growing number of studies suggest that combining mainstream oncology with herbal medicine or Chinese medicine makes sense. Here’s what researchers have found so far.
At the Chinese Academy of Medical Sciences in Beijing, researchers treated 188 throat cancer patients with either standard radiation therapy or radiation plus a Chinese herb formula. After 5 years, survival in the radiation-only group was 37 percent. But among those receiving both radiation and Chinese herbs, the figure was 53 percent, a significant difference. Efrem Korngold, O.M.D., L.Ac., says that the herbs most widely used in cancer treatment are considered strengthening (“tonifying”) in Chinese medicine. In Western terms, that’s the equivalent of immune enhancing. Chinese herbs used to treat cancer include astragalus, ginseng, Chinese angelica (dang gui), and rehmannia.
Shiitake mushroom extract has also been studied. Long considered a health-promoting delicacy in Asian cuisines, shiitake mushrooms contain the compound lentinan, which stimulates the immune system against infections and cancer. Lentinan injections are increasingly used to complement chemotherapy in Japan-and with good reason. In one study, 275 people with advanced stomach cancer were given chemotherapy with or without lentinan injections beforehand. The lentinan group showed greater immune system activity and survived significantly longer. Mai take mushrooms have similar benefits, thanks to the immune-stimulating beta-glucan they contain.
In Chinese medicine, acupuncture has also proved helpful for some people. Several studies show that acupuncture reduces chemotherapy-related nausea and vomiting. At the University of California, Los Angeles, researchers gave 30 women undergoing chemotherapy for breast cancer either real acupuncture at points used to relieve nausea or acupuncture at placebo points. The real acupuncture group reported only half as many episodes of nausea and vomiting.
Acupressure can also be beneficial. Researchers at the Queen’s University in Belfast, Northern Ireland, came up with the same findings using acupressure in a study of 100 people who vomited as a result of chemotherapy. The patients were fitted with Sea Bands, elastic bands with buttons that press on Pericardium 6, a point used to treat nausea. More than 75 percent of the patients enjoyed significant relief from nausea. Pericardium 6 is located on the inside of your upper arm two thumb widths above the wrist crease.
15. Use Pain Control
Cancer patients often fear that they will have to endure terrible pain and suffering. But a great deal of cancer pain can be well controlled with medication.
Tragically, some oncologists under medicate cancer patients in the belief that they will become addicted. But pain specialists say that the risk of addiction is tiny. They view under medication of cancer pain as unconscionable and criticize oncologists for being slow to increase dosages. Most puzzling of all, some oncologists are reluctant to embrace non drug approaches with clearly demonstrated pain-relieving benefits, such as acupuncture, hypnosis, visualization, and TENS machines. (The “TENS” are small devices that deliver mild electrical current into the skin to relieve pain.) “Clinics that specialize in chronic pain management use all these approaches routinely,” Dr. Lerner says. “Yet many cancer patients still suffer because of inadequate pain control. It’s a terrible shame.”
Even massage can help. At the University of South Carolina in Columbia, researchers gave 28 hospitalized cancer patients either a 10-minute visit or a 10-minute massage. Pain levels were assessed using standard psychological tests. After just one 10-minute massage, pain levels decreased significantly. Other studies have shown that longer massages lead to extended pain relief. People with cancer report up to 60 percent less pain with a 30-minute massage.
16. Promote Your Own “Healing”
“Curing is what physicians do. They strive to eliminate disease and allow recovery,” Dr. Lerner explains. “Healing is what patients bring to the experience. Healing is a deeply personal process of becoming whole again.” If healing is neglected, people who have cancer may feel emotionally shortchanged even if they are cured.
Healing involves coming to terms with your life and working to live it to the fullest, even if cancer cuts it short. The tools of healing involve the complementary therapies: good nutrition, moderate exercise, social support, stress management, and a sense of connection to the natural world around you. They all improve quality of life.
“Even when a cure is impossible, healing need not stop;’ Dr. Lerner says. “People can continue to grow even in the face of life
threatening illness. All the great religions teach that life involves suffering. Suffering can lead to bitterness and defeatism or to growth and wisdom. When you have a serious illness, you make that choice for yourself.”