13 STEPS TO WORLD CLASS CANCER CARE (C) National Kidney Cancer Association. 1994. Eugene P. Schonfeld, Ph.D. President and Chief Executive Officer National Kidney Cancer Association 1234 Sherman Avenue Evanston, Illinois 60202 708-332-1051 Your doctor says you have cancer. Your mind whirls with emotion. Your spouse starts crying. You are in the middle of a health crisis. Now, more than ever, you need to think clearly despite strong emotions. I know the feeling. Five years ago, I was diagnosed with cancer. Over 1.1 millions Americans will be diagnosed with cancer this year. Over half of them will survive more than five years. Here's how you can get world class cancer care and increase your odds of surviving: 1. Do not rush into surgery or treatment without getting some basic facts about your specific type of cancer. Your doctor and your emotions may be telling you to act quickly. But your tumor has been part of you for months, perhaps even years. Not all types of cancer are fast growing. Take your time to get a few basic facts so you can make informed decisions. Time is important, but it is more important to get great care than to save a few days or a week. 2. Start information gathering by calling 1-800-4-CANCER. The Federal government operates the Cancer Information Service. You can call and get information on any type of cancer. There are over 200 types of cancer. Each type of cancer is treated differently. Ask for the "state-of-the-art statement" for your type of cancer. There are two types of statements, one for patients and one for physicians. Ask for both. The physician statement contains more details and technical information. The statements will be mailed to you. Ask the Cancer Information Service for phone numbers of cancer patient organizations for your type of cancer. 3. Find out if there is a patient or research organization which specializes in your type of cancer. Y-Me serves breast cancer patients (800-221-2141). US Too serves prostate cancer patients (708-985-5255). The American Brain Tumor Association (800-886-2282) and the National Kidney Cancer Association (708-332-1051) serve patients with these types of cancer. These organizations have information which can be helpful to you. For example, the National Kidney Cancer Association publishes a 56-page booklet which is free to kidney cancer patients. Visit a medical school library. Read medical journals if you have a technical background. Or get your local public library to do a computerized literature search for information on your disease. Many libraries will search for you free of charge. You can get abstracts of articles. You can see which doctors are doing the most research and have them treat you. 4. Get a second opinion from a doctor who specializes in your type of cancer. Your doctor may be an excellent physician. But some types of cancer are very rare so your doctor may not see enough cases to be good at treating your disease. In medicine, practice makes perfect. You can find an expert doctor by asking the Cancer Information Service or cancer patient organizations for the names and phone numbers of experts in your area. Call one or two expert doctors and make appointments to see them. Sometimes, these "super doctors" are very busy and you may need a referral from a cancer patient organization. Ask for this help. 5. When you get a second opinion, bring your CAT scans, X rays and other medical records with you. You don't want to waste time repeating tests. If your doctor or hospital refuses to give you X-rays or records, call your lawyer. These records belong to you, not to the doctor or hospital. But do not be surprised if the doctor asks you to sign a receipt for your X rays or charges you for copying documents. A receipt is simply a written record that you were given the materials you requested. Do not worry about offending your doctor if you get a second opinion. Your doctor gives second opinions himself. Really competent doctors are not worried about losing patients to other physicians. In fact, they will often recommend patients to specialists. In any case, your doctor works for you. He is your consultant and advisor, and you pay his bill. Remember, you are his boss. 6. Get the most qualified physician to treat you. Do not confuse "bed side manner" with true expertise. You want to be cured, not charmed. You are more likely to find a physician expert at a comprehensive cancer center associated with a university medical center, particularly for a rare type of cancer. However, there are many excellent physicians in community hospitals. Do not hesitate to be treated by them if they have experience with your type of disease. Simply ask your doctor how many patients with your type of cancer he has treated in the past 12 months. If the answer is less than 12 or 15, find another doctor who has more experience. Some medical centers are famous. However, when it comes to rare cancers, a less well known cancer center may offer more advanced care and have more doctors who are experts in your type of cancer. For example, the Cleveland Clinic in Cleveland, Ohio is a "power house" in kidney cancer. 7. If surgery is done to remove any tumor, ask your doctor what will happen to your tumor. Your tumor is extremely valuable. It contains information about your disease. You want your tumor to be analyzed to get its secrets. Your tumor can be tested to determine if it is resistant to certain drugs. If you need chemotherapy, you will want to avoid these ineffective drugs. Your tumor can be turned into a vaccine to treat a recurrence of your cancer. The lymphocytes (white blood cells) in your tumor can be grown in a laboratory and put back into your body to fight any cancer left behind after surgery. For some cancers, genetic testing is possible. Your tumor can be frozen and saved for future testing or use in gene therapies. You must talk with your doctor before surgery and arrangements must be made if you are to get the benefits of these scientific advances. 8. If you are treated surgically, do not believe your doctor if he says "I got it all." What he really means is that he removed all the tumor which he could see. If didn't see it, he didn't remove it. Some tumors have many blood vessels. Tiny bits of tumor or even a few cancer cells can drift off in the blood stream and settle elsewhere in your body. Years after your primary tumor is removed, these cells can form new tumors and kill you. You will need regular check ups such as CAT scans, bone scans, and blood tests. If a new tumor starts up, you want to catch it early and treat it promptly. Never let your guard down. Make sure you get follow up care. 9. Join a cancer patient organization which specializes in your type of cancer. Many organizations provide emotional support for cancer patients. But don't settle for emotional support. You want to beat cancer, not just feel good emotionally. If you read popular books on cancer such as Bernie Siegel's books, remember the real message about emotional support: "Good mental health is necessary for good physical health." But do not expect tumors to just disappear because you have engaged in "imaging" or some mind technique. The best organizations have ongoing information programs for patients. For example, the National Kidney Cancer Association publishes a quarterly newsletter and holds an annual convention for patients and physicians. It also operates a free computer BBS (708-332-1052) with information for patients. Science is making tremendous progress in many types of cancer. Stay informed. Get involved. Meet other informed patients. Meet the doctors and scientists who are true experts in your type of cancer. If you have a recurrence, you will know what your treatment options are and who can give you the best care. Be an activist, support the patient organization so it can support you. Act in your own self-interest. 10. Interact with doctors in a professional manner. Before you go to see your doctor, send him a letter or FAX telling him about any changes in your medical condition since your last visit. Include new symptoms such as pains, bleeding, any new illnesses such as colds, and any crises in your life such as getting fired. Then, include your questions. You will be prepared to meet your doctor. Your doctor will be prepared to answer your questions. This business-like approach will make your doctor respect you. It will also set the tone for your patient-doctor relationship. Your doctor will also like you because you won't waste his time. You will get better care than other patients who are less professional. If your doctor will not answer your questions, fire him and get another doctor. You are entitled to clear communications. 11. Appeal any insurance claim that is rejected. Your ability to get state- of-the-art care can be influenced by your insurance coverage. If a claim is rejected, resubmit it. Another claims reviewer at your insurance company may evaluate your claim differently and authorize payment. Every insurance company has a claims appeal process. If a claim is rejected, appeal it. If it is still rejected, contact your state insurance commission and patient organization for assistance. Sometimes, a call to an insurance company medical director from a patient organization can get you payment of a claim. You can sue your insurance company as a last resort, but you must have a legitimate case. Be reasonable. Do not expect your insurance company to pay duplicate claims, fraudulent claims, claims which are not covered by your policy, or claims for "snake oil" treatments. As a policyholder, your insurance company pays claims with your money. You want your insurance company to have a fair review process but not a stupid one. 12. Don't take vitamins or other medications without talking to your doctor. Many patients want to help themselves. However, large doses of some vitamins can interfere with some chemotherapy drugs or radiation therapy. Do not medicate yourself unless you are a physician. Do not throw away money on treatments which have no medical justification. Some alternative therapies are based on sound theories. However, without scientific knowledge and investigating details, you will not be able to tell which ones have some validity and which are exploiting vulnerable patients. If your cancer does not respond to the first treatments you try, move on to the next one. There are many valid therapies for every type of cancer. New ones are being developed constantly. 13. Continually seek information. If a doctor tells you a tumor is inoperable, get a second opinion. Call the Cancer Information Service to get a list of clinical trials for your type of cancer. When you get the list, review it with your doctor. Ask why his proposed trial is best for you. Talk with other patients who have had any proposed therapy so you know what to expect. If there are side effects, remember not all patients get every side effect. Ask your doctor what he can do to control side effects. When you get cancer, you are a big time health care consumer. It pays to be a smart shopper. Here's a true story to prove it. Herm Singer was diagnosed with kidney cancer. His tumor and kidney were removed surgically. One year later, his tumor came back where the old kidney was. He was treated again with surgery and with four different drugs. Nothing worked. Finally, at a meeting of the National Kidney Cancer Association, he heard an expert doctor talk about surgery as a treatment for advanced disease. He went to see this doctor who operated on him for twelve hours. He has been cancer free for over two years. What if he hadn't gone to the meeting? What if he gave up after his first failure? What if he didn't get new information and expert care? Your ability to think clearly is your best weapon against cancer.