Patients and families have rights, responsibilities, and many options as they face kidney cancer. Here are important empowering steps you should take following your diagnosis.
One way you can increase your odds of survival after a diagnosis of kidney cancer is by becoming a strong self-advocate at all stages in your care.
Remember that you and your family have options and rights – as well as responsibilities – at every step of the way as you deal with your cancer. By exercising your options, rights, and responsibilities, you will become empowered and be able to make sound decisions. And your peace of mind will increase.
Following are the basic steps to empowerment and increasing your odds of surviving.
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. First steps might impact your disease course or future treatment options. Time is important, but it is more important to get the right care than to save a few days or a week.
Get the Facts
It’s important to become informed about your diagnosis and options as early as possible. A good first step is to go to libraries or search the Internet for disease information. Visit a hospital patient library or 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 you can consider getting a second opinion regarding treatment options. Consider buying a medical dictionary. Be sure to review the patient resources section included in this book.
Another good step is calling the Federal government’s Cancer Information Service at 1-800-4-CANCER. You can call and get information on any type of cancer. There are more than 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 doctors. Ask for both. The doctor 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.
Contact Your Patient Organization
The Kidney Cancer Association (KCA) serves kidney cancer patients and offers information that can be helpful to you. In addition to this book, KCA distributes a free monthly email newsletter, Kidney Cancer News. A quarterly publication, Kidney Cancer Journal, is distributed to doctors’ offices and it may be accessed at www.kidneycancerjournal.org.
You may also contact the American Cancer Society at 1-800-ACS-2345. The U.S. Centers for Disease Control & Prevention website (www.cdc.gov) publishes a list of cancer information links.
Finally, look for a local cancer patient support group or patient advocacy meeting in your community and attend. You can learn more about finding a kidney cancer support group or meetings by calling the Kidney Cancer Association at 1-800-850-9132.
Get a Second Opinion
Finding a doctor who specializes in your type of cancer is a good idea. 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.
Start by asking your doctor for a referral for a second opinion. Don’t hesitate to take this step – doctors aren’t upset if you get a second opinion, and this is your right and responsibility.
If you do not know the name of a specialist, you may obtain names from the Kidney Cancer Association by calling 1-800-850-9132.
You can also find an expert doctor by asking the Cancer Information Service or the Kidney Cancer Association 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.
Keep Good Records
Get in the habit of collecting reports and records at the time of visits to doctors or other health professionals, and keep everything organized. You will want to keep pathology reports from all surgeries and/or biopsies, reports from scans and other tests, and records of any treatments given. A binder with separation tabs is an ideal way to organize your health information and medical or surgical reports.
Bring these records to any new appointment, especially on in which you are receiving a second opinion. Take films or a CD with your most recent scans to the visit (don’t leave them there unless the doctor asks you to.) Keep an updated, legible list of all your medications, and provide the doctor with a copy.
You are entitled to copies of your medical, surgical, and pathology records. 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. Don’t hesitate to ask for your records. If you have any trouble obtaining them, contact the hospital ombudsman.
Hire an Expert
Get the most qualified doctor to treat you. Do not confuse “bedside manner” with true expertise. You want to be given the most appropriate treatment, not be charmed.
You are more likely to find a doctor expert at a comprehensive cancer center associated with a university medical center, particularly for a rare type of cancer. However, there are many excellent doctors 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 or she has treated in the past 12 months. Then compare this number with the other doctors you are researching.
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. The Kidney Cancer Association can assist you in finding an oncologist that specializes in kidney cancer if you need help.
Be sure to ask for statistics measuring surgical success, morbidity, and rates of complications associated with treatments.
Communicate Professionally With Your Doctor
Establishing good communications with your doctor is essential to a good outcome. To start, fax all records you have prior to your visit, and take your records with you. You may also want to send a letter or fax telling your doctor 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. Ask your doctor for a “point person” in the office for your questions, and determine the preferred method – e-mail, fax, phone, etc.
It’s always a good idea to have questions written down before your visit. Be honest and clear with your questions, and be straightforward in all of your communications with your doctor. You have the right to expect honest, clear responses. If possible, take an advocate with you to help with note taking and for support.
By taking these steps, you will be better prepared to meet your doctor. Your doctor should be able to answer your questions, and should be receptive to your active participation in the determination of the best treatment plan for you. This business-like approach will make your doctor respect you. It will also set the tone for your patient-doctor relationship. If your doctor will not answer your questions, find another doctor. You are entitled to clear communications.
Know All You Can About Your Tumor
Your tumor contains information about your disease. In some cases, this information can be used in further treatment.
Researchers are investigating, for example, whether tumors can be turned into a vaccine to treat a recurrence of cancer. You can ask your surgeon or oncologist if there are vaccine trials available that should be considered before scheduling your surgery so that preparations for processing the tumor specimen are in place, if necessary.
Remember, though, that it is not routine to save tumor specimens. Ask your surgeon if saving the tumor is appropriate in your case.
Be a Skeptic
Your surgeon will not be able to guarantee that “I got it all.” If you are treated surgically, you should be skeptical of such a claim. What the surgeon really means is that he or she removed all of the tumor that could be seen. If your surgeon did not see it, it wasn’t removed.
Some tumors have many blood vessels. Tiny bits of tumor or even a few cancer cells can drift off in the bloodstream 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 CT 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 regular follow-up care.
Be Accountable for Your Follow-up
Don’t assume that someone at your doctor’s office is responsible for your follow-up. You should take responsibility for getting a follow-up scheduled and for keeping the appointment.
Get regular follow-up testing, which might include CT scans, bone scans, and blood tests. Get the results of these tests in writing, and ask for a referral or see an expert for abnormal findings. If you are uncomfortable with abnormal findings that your doctor is not treating, ask for a second opinion.
Appeal and Hang Tough
Today’s health care insurance system can be complicated. Again, remember that you have rights and options, but also responsibilities. An important first step is finding a financial representative or billing counselor at the institution that will be submitting bills related to your care (hospital, medical group, etc.). Communicate clearly and professionally with this person, who could end up being your best ally. Work with all billing and reimbursement parties to set up ongoing payment plans that are reasonable and ensure your credit will be protected.
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. Be persistent.
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 help get your claim paid.
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 unproven treatments. Since you are a policyholder, your insurance company pays claims with your money. You want your insurance company to have a fair review process but not an unreasonable one.
Don’t Play Doctor
Don’t take vitamins or other medications without talking to your doctor. Many patients want to help themselves. Vitamin supplements and good nutrition have a role to play in cancer care. However, large doses of some supplements may interfere with some drugs or radiation therapy. Do not medicate yourself, even if you are a doctor. Excellent nutrition information is available from the American Institute for Cancer Research.
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.
Join and Be Active
Join a cancer patient organization that specializes in your type of cancer. Many organizations provide emotional support for cancer patients. But don’t settle for emotional support alone. 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 Kidney Cancer Association publishes a quarterly newsletter and holds an annual convention for patients and doctors.
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.
Seek and Ask
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 this 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 or she can do to control side effects.
Patient empowerment leads to a better understanding of your disease, a stronger sense of control over your cancer, and the best approach to treating your kidney cancer. There are many resources available to help you and your family adjust to the diagnosis. Don’t be afraid to ask about them.