Living With Kidney Cancer
The impact of kidney cancer on your life is complex. Here are suggestions on what to expect — from employment matters and health insurance to diet, lifestyle, and family relationships.
As you learn more about kidney cancer, and perhaps meet other kidney cancer patients, you will see that it is possible to live a full and satisfying life after your diagnosis. But your life will obviously be impacted, both during your initial treatments and during your recovery phase.
As you adjust to your diagnosis, you may deal with a number of physical, emotional, and practical issues that could pose challenges. It is important to remember that dealing with these issues is a central part of your overall care – and resources are available to help. This component of your overall health plan is called Supportive Care, and it encompasses all forms of care aimed at supporting your quality of life.
Among the important elements of Supportive Care are the management of nausea, pain, fatigue, nutrition, exercise and physical therapy, family life, and practical matters such as health insurance. As you begin to create a Supportive Care plan, be sure to have frank discussions with your doctor and healthcare team at any time you feel anxious or uncertain about what you should do. An expert oncology team should be able to address any of these issues, providing care or making a referral for help. (Information about end-of-life issues, palliative care, and hospice are included in the chapter “Emotional Well-Being.”)
Nausea, Pain, and Fatigue
Cancer patients often have to deal with nausea, pain, and fatigue – which have a multitude of causes. Some are related directly to cancer itself, others to the treatment that kidney cancer patients go through. Not everyone experiences these symptoms, but if you do, treatment is available.
Nausea may have a number of causes, including systemic treatment (immunotherapy, chemotherapy, targeted therapy) or radiation treatments, tumor growth, or anxiety about your disease. A variety of strategies aimed at reducing nausea may be attempted, ranging from eating smaller meals to drinking smaller amounts of fluids more frequently, drinking salty fluids, and engaging in relaxation exercises. If these techniques are not effective, your doctor might prescribe anti-nausea medicine. Also known as anti-emetics, anti-nausea medicines are usually taken orally and can significantly reduce symptoms of nausea. Many are available, and various kinds or combinations can be tried until a successful outcome is achieved.
If you experience pain, it may be related to your kidney cancer itself or to some of the treatments you might undergo. You should always communicate clearly and honestly with your health care team about any pain you might be experiencing. Describe the quality of your pain – that is, where does it fall on a scale of 0 to 10 (0 being “no pain” and 10 being “the worst imaginable pain”)? Does anything make your pain increase or lessen (i.e. change in body position to lying, sitting, standing; application of heat or cold to the painful area)?
Working with your doctor and health care team, you may want to establish goals for pain management. What is it you need to be able to do to improve the quality of your life (helping your children with homework after school, for example)? Many pain medications are available to control pain – both prescription and over-the-counter. Note: Fear of addiction to pain medication can lead to unnecessary distress, pain, and not being able to do things that are important to you. This fear is not valid, as there are very few “addiction issues” in cancer patients. It is very important to discuss this and other concerns you have about pain medication with your doctor and nurse.
Some patients with cancer may think that being on pain medications means that they are near the end of their life. This is not necessarily true. If this is a worry or concern, please let your doctor know – he or she can explain the use of pain medication in your recovery plan. Pain medications can be supplemented or in some cases replaced by non-medical interventions such as meditation and relaxation therapies.
One of the most distressing side effects of cancer, fatigue can significantly impact your life. Fatigue may be caused by many factors, including depression, insomnia, anemia, the effects of cancer treatment, and metabolic disturbances caused by your cancer. Treatment-related fatigue is quite common.
To combat fatigue, patients are advised to pace their activities and prioritize where they want to expend their energy. Organizing your home and work environment in a way that helps accommodate your lower energy levels can help, and you should try to limit your physical demands before, during, and after treatment for kidney cancer. Treatment for anemia (below-normal levels of red blood cells) can help, as can exercise regimens, nutrition, and stress management techniques. Drug therapy for fatigue is occasionally used. Be sure to discuss your level of fatigue with your health care team.
It is not unusual for cancer patients to become constipated. Contributing factors are pain medications, cancer treatment, lack of exercise, and poor nutrition. In many cases, nutritional adjustments and increased intake of water can be very helpful. Other approaches are also available — again, discussion with your health care team is an important first step.
It is not unusual for cancer patients to become depressed. Current low-dose antidepressants are safe, well tolerated and effective as treatment. Use of antidepressants should not be considered a sign of weakness – they are an important part of an overall treatment plan for some patients.
Here is some day to day life that you might be concerned.
The Role of Diet
The precise relationship between diet and kidney cancer is unknown. However, diet has been estimated to be a causal factor in about 35% of all cancers. Some people think a high protein diet might be a risk factor. Obesity also may play a role in kidney cancer, as it does in other cancers. There is little hard research providing evidence that changes in diet will prevent a recurrence of cancer or cure cancer, however.
A healthy, well-balanced diet helps the patient maintain strength, prevents body tissues from breaking down, prevents infection, and promotes the regeneration of normal tissues. Eating right is especially important if you are undergoing cancer therapy. Many foods can be beneficial; for example, nutritionists recommend eating foods rich in vitamins C and A and fiber and including plenty of fruits, vegetables, and whole grains in your diet. Take the time to learn about good nutrition, and if helpful, consult with a professional nutritionist.
Some patients become vegetarians or adopt a macrobiotic diet. Such a diet may be beneficial as long as it is properly balanced and meets your nutritional needs. Adhering to a specific diet regimen may make you feel like you have more “control” over your disease. But there is little evidence that change in diet will affect your cancer growth and some diets can be harmful or distract at a time when you need your energy to fight your cancer. Eat a healthy diet. Remember that maintaining calories is one of the most important things you can do during times of intense treatments such as surgery, radiation therapy, and systemic therapies. It is important to discuss any modifications in your diet with your healthcare team.
If you are overweight, be sure to discuss your weight with your oncologist before starting a weight-loss plan, as your doctor may feel that it would be detrimental to your treatment plan to pursue losing weight at specific times during your illness and treatment.
Patients often wonder if they can drink alcoholic beverages after having a kidney removed for kidney cancer. The answer is “yes.” A social drink now and then, a beer at a sporting event or wine with a special dinner probably won’t hurt you. Discuss this with your doctor, as it may not be recommended at specific times during treatment. After cancer has disrupted your life, such simple pleasures become more meaningful. There is even some medical research evidence that suggests that a glass of wine on a regular basis may have health benefits. You may also find the new non-alcoholic beers to your liking. Beverages brewed from whole grains can have nutritional value.
Additional information about the role of nutrition in cancer, including downloadable brochures and pamphlets, can be found on the American Institute for Cancer Research website.
Many cancer patients medicate themselves with food and nutritional supplements. For example, some patients take megadoses of vitamins in the belief that they will prevent recurrence or even cure their cancer. There is little research evidence that such self-medication can directly influence recurrence or cure.
Patients should exercise extreme caution in using vitamins. Studies show that taking megadoses of some vitamins, such as vitamin A or vitamin E, can be damaging to health.
Supplements which contain vitamin A may interact with some drugs to produce unwanted side effects and toxicity. They can also cause liver toxicity or damage when taken in combination with retinoids.
Patients who have had a nephrectomy usually have one functioning kidney and half their normal renal capacity. Megadoses of vitamin C can damage the remaining kidney and cause the formation of kidney stones. Always inform your doctor that you have only one kidney, as this can affect any future medication prescription that may be ordered for you.
Patients should also recognize that dietary supplements sold in health food stores are not regulated by the U.S. Food and Drug Administration (FDA). All processed food products, all prescription drugs, and all over-the-counter drugs sold in the U.S. are regulated by the FDA. Manufacturing plants for these products are also inspected by the FDA.
While there are many good manufacturers of dietary supplements, you cannot be certain of the quality of supplements. For example, all prescription drugs are date coded and may not be sold after a certain period of time to ensure efficacy and safety. Dietary supplements are not necessarily date coded, and it is difficult to know if a product on the shelf of a health food store is fresh. Manufacturing plants for these products are not inspected by the FDA.
Do not start taking megadoses of vitamins, new vitamins, or other nutritional supplements without first talking with your doctor. Some patients do not want their doctor to know about their self-medication behavior because they fear that he or she won’t approve. In reality, every experienced doctor has worked with patients who have taken supplements. Your doctor won’t be surprised if you express an interest in nutritional supplements.
While your doctor may not be a nutritional expert, a frank discussion may prevent you from making a serious mistake or help you avoid a dangerous drug interaction. If you want to pursue nutritional strategies, seek out a physician who is an expert at nutrition research.
Alternative Cancer Treatments
Some patients believe that “conventional” medicine will not cure their cancer. They think that “toxic” treatments will damage their immune system. These patients do not appreciate how immunotherapy works or how advanced scientific cancer care has become.
You may have heard about shark cartilage as a cancer treatment. There is no research evidence that eating shark cartilage works. The same holds true for bovine cartilage, another alternative treatment.
Some patients try Essiac tea, a brew made from tree bark and herbs. Essiac contains some interesting chemicals, but there is no research evidence that it can cure cancer or prevent recurrence.
Herbs have been used in medicine for centuries. In fact, most pharmaceutical preparations were originally made from plants until the 1950s when organic chemistry was developed, leading to the synthesis and manufacture of naturally occurring chemicals. Taxol, a drug used to treat ovarian cancer, was originally made from the bark of the Pacific Yew tree until it could be synthesized.
Many herbs cannot be simply ingested. They must be prepared to release their active ingredients and make them biologically available in the body. In addition, some herbs can interact with drugs. Without adequate knowledge, you can injure yourself.
Some patients try going to cancer clinics in Mexico, the Bahamas, or Europe. There is no evidence that treatments available in these clinics offer any therapeutic advantage over what is available at cancer centers in the United States. Moreover, your insurance is not likely to reimburse you for care at these clinics. Some of them may also engage in unethical and dangerous medical practices.
For example, coffee enemas to “de-toxify” patients have caused colon ruptures, resulting in serious infections and death. Another remedy contained rattlesnake meat found to be contaminated by rare bacteria related to tuberculosis. At least three patients died as a result of that remedy.
If you smoke, stop and never smoke again. A history of smoking is one of the risk factors for kidney cancer. Get professional help by asking your doctor to recommend a smoking cessation program. If you are worried about gaining weight, stop smoking anyway and deal with any weight gain through diet and exercise. Encourage people around you, especially young people, to stop smoking cigarettes or avoid starting.
Exercise is good for you. After surgery, modest exercise can help you regain your muscle tone and help rebuild the muscles that were cut. Exercise can complement dieting, making it easier to lose weight.
Try to get at least one-half hour of exercise every other day. Vigorous walking, jogging, swimming, or other aerobic exercise promotes good cardiovascular health and may help reduce high blood pressure. Walking is an excellent form of exercise if done regularly.
Exercise is also a good way to reduce and manage stress. Regular exercise is also thought to slow down the aging process. Unfortunately, in modern society where many people work with their brains rather than their bodies, we often don’t get enough exercise. Try to make time for regular exercise and to make it a part of your lifestyle.
Your hospital may have a physical therapist on staff who can counsel you and put together an exercise program for you. Ask your doctor to arrange a meeting and be sure that your doctor agrees to your exercise program based on your physical condition. You can start out slow and easy, gradually increasing the amount until you achieve your goals. Always consult with your doctor before embarking on an exercise regimen so changes in levels of fatigue can be accurately monitored and fragile bones and/or muscles will not be stressed.
Kidney cancer will probably have a major impact on your home life. When one member of the family has kidney cancer, the whole family has kidney cancer. The love and support of family members are important in every phase of diagnosis and treatment. When the disease is first diagnosed, the family can comfort the patient. When the patient is in the hospital, family members often supplement the nursing staff in watching over the patient. When the patient comes home from the hospital, family members care for the patient. When follow-up and treatment continue, family members facilitate the process.
Experienced doctors know that the family is hurting, and helping the family is another way to help the patient. And just as the doctor develops a relationship with the patient, the doctor often develops a relationship with the patient’s family. The doctor-patient-family relationship usually starts at the time of diagnosis. Most doctors will want to brief family members along with the patient about the diagnosis and plan for the patient. It helps if this briefing takes place all at one time so family members hear exactly the same things and family members get to hear the questions of other family members.
If a nephrectomy is done, the surgeon can send word of how the operation is going to waiting family members. After the operation, the surgeon will also brief the family about the patient’s condition. As the patient recovers in the hospital, family members will probably meet with the patient’s doctors and nurses. This contact can provide the family with an opportunity for questions and learning.
Research has shown that a person living with cancer will only remember a limited amount of information that is given during an office visit with the doctor. This happens because the patient is trying to process a lot of new information and because people remember less when dealing with a stressful situation. To increase doctor-patient communication, you should write down questions you want to have answered before arriving for your appointment. Find a family member or friend willing to accompany you to all medical appointments. This person can take notes for you while in the doctor’s office and later help you clarify information. If you choose, this person can serve as a contact to provide information to the concerned, significant people in your life. It can become exhausting for patients to disseminate information about their progress to loved ones numerous times. This approach also discourages different family members from contacting the doctor individually to be briefed on the patient’s condition. It’s important to have a well-thought-out plan for communicating information among loved ones.
Those who experience kidney cancer may find that family becomes one of the most important factors in their recovery. Connecting with other families who have gone through the same challenges can be very helpful. The Kidney Cancer Association maintains a Facebook® Fan Page, message board, and support groups for families facing cancer. You can learn more about these resources and other issues related to families in the chapter “Emotional Well-Being.”
Like any major illness, costs for cancer treatment can be high. If you have health insurance, such as coverage through your employer, you should read all of the information brochures and details of your policy. Become familiar with the terms of your coverage and the procedures for filing claims. If your employer is a larger company, you should meet with the company’s benefits administrator and/or medical director. These people can help you. It is also a good idea to have a friend or family member help you review all your medical bills, insurance claims, payments, and reimbursements.
Health plans, including insurance, are regulated by federal and state laws, and these laws may vary. Be prepared to do your homework regarding the laws in your state.
Insurance Coverage for Clinical Trials
Clinical trials of investigational treatments (those not approved by the FDA for kidney cancer) are frequently used medical options for patients dealing with advanced kidney cancer. Often, insurance companies only reimburse for recognized standard forms of treatment. Therefore, it is important to check with your insurance company regarding their reimbursement policies before beginning a specific treatment.
If you are currently in treatment and your insurance company has rejected one of your claims, there are several things you can do. First, you can simply resubmit the claim. Often, it will be processed by a different claims reviewer who may approve it. Second, many insurance companies have formal claims appeal processes. You can appeal your claim and have it reviewed. Third, if a claim is rejected after submission, and you work for a large company, you should notify your employer’s benefits administrator, corporate medical director, or union benefits representative. They may be able to make suggestions or resubmit the claim for you. Your employer is the insurance company’s customer, and the insurance company wants to keep customers happy. If your employer intercedes on your behalf, the claim may be paid. A good company will take this action because it pays a lot of money for its employee health insurance program. It wants to get value in return for its premiums. Fourth, you can write to your state’s insurance commissioner and send a copy of the letter to your insurance company. Insurance is a regulated industry and most states have a commission or government agent who oversees insurance companies operating within the state. Your insurance company may decide to pay your claim rather than have to respond to a commission inquiry. If your insurance company is still unresponsive, you can file a formal complaint with the insurance commission in your state. Record the date and name of the person you talk to whenever you call your insurance company.
The Kidney Cancer Association does not advocate confrontation as a tactic for resolving insurance claims. History has shown that well-intentioned people have offered bogus cures for cancer and a host of other illnesses. Some have filed false insurance claims and committed insurance fraud; others have abused their coverage. It is only appropriate for insurance companies to be careful with the funds of their policyholders. Prudence in paying claims holds the cost of insurance down and makes it more affordable for all patients.
You stand a better chance of being reimbursed for an experimental treatment if it has the support of your doctor and other physicians, if it is administered through a major university teaching hospital, and if prior experience with the treatment indicates that it may help you. These things reassure the insurance company that your claim is not frivolous and that the treatment is appropriate even if it is unproved. Involve your doctor and hospital treatment center if you have difficulty getting support from your insurance company. Talk with the financial counselor at the hospital where you’re getting treatment — they can work with your insurance company to be sure that charges were billed correctly, that correct “codes” were used, and to clarify charges. Charges for physician visits, tests, and procedures are determined based on whether or not they are considered “standard of care” for a patient with kidney cancer. Your insurance company should cover those charges that are “standard of care,” while charges for tests done specifically for “research” are typically covered by the sponsor of the clinical trial that is conducting the research. Your healthcare team or financial counselor can help you with treatment bills and insurance issues.
It may seem strange to think about getting or increasing your life insurance coverage after you have cancer. However, there are many reasons you may need to obtain or increase your life insurance. For example, if you seek to borrow money or want a home mortgage, your bank may require that a life insurance policy be in force, naming the bank as the beneficiary. If you own a business or have business partners, your company may need to carry a life insurance policy on you to buy back your stock in the event of death.
Increasing numbers of cancer patients survive their disease. The longer you survive, the more likely you are cured, and the better you are viewed as an acceptable risk by the insurance companies. There are insurance companies willing to provide coverage to cancer patients if they no longer show disease and a suitable amount of time has passed since the initial treatment and diagnosis.
If you wish to obtain life insurance or increase your coverage, talk with a qualified insurance agent to explore what might be available. Be aware that you may be assigned to a high-risk class and pay a higher price for coverage than someone who has not had cancer.
Medicare and Medicaid
Kidney cancer patients may qualify for treatment under Medicare and Medicaid. An easy way to learn more is to ask the social services department or admissions officer at your hospital about benefits. Your hospital will have all pertinent information on these government programs. Precise benefits may vary from state to state. You should also contact your local office of the U.S. Department of Health and Human Services (HHS) or visit the Medicare website at www.medicare.gov for more information and to obtain one of the following U.S. government publications covering Medicare:
Medicare & You. Contains detailed facts about Medicare benefits and the health plan options available to you. Publication number 10050.
Medicare and Home Health Care. This pamphlet provides information about home health care under Medicare. Publication number 10969.
Medicare Hospice Benefits. Hospice care is a special type of care for terminally ill patients. Learn how to find hospice programs and where to get information. Publication number 02154.
Medicare Preventive Services to Help Keep You Healthy. Use this guide to lower your risk of cancer, flu, pneumonia, diabetes, etc. Publication number 10110.
Where to Get Your Medicare Questions Answered. This guide provides the latest information in an easy-to-understand question-and-answer format, including definitions of important terms. Publication number 02246.
Your Medicare Benefits. This pamphlet provides information about what your health care plan covers. Publication number 10116.
You can also obtain these publications by calling toll-free 1-888-878-3256, by writing to the Federal Citizen Information Center, Department WWW, Pueblo, CO 81009.or by visiting their website at http://www.pueblo.gsa.gov.
For specific questions about the Medicaid program, visit www.cms.hhs.gov/home/medicaid.asp.
Employment and Business
Your employer will probably learn that you have kidney cancer because you will be missing from work for several weeks while you have a nephrectomy. You may also miss work if you participate in certain clinical trials or treatments. Also, your insurance claim submissions may have to be signed by your employer.
Your relationship to your job is a very important factor in your quality of life. If you are unhappy with your job, your cancer may serve as motivation for you to think about changing jobs. If you have a high-stress job or one that demands a lot of extra time or extensive travel, you may want to switch jobs within the same organization.
Even though you may be cured of cancer, an employer may perceive you as a risky employee or an employee who is going to be more expensive to insure or who is going to require time off. Nevertheless, laws are in place to protect you from discrimination. The Americans with Disabilities Act is a Federal law which prevents job discrimination against people with a cancer history. ERISA is the Federal law which governs employer health benefits. The Medicare and Medicaid programs are also governed by Federal laws.
Your health condition will also be a factor if you are searching for a new job. Most employers have a policy of giving job candidates pre-employment physicals. Your health record will also be part of any employer insurance application, and your employer may have to sign these forms when they are submitted to the insurance company for approval.
Under no circumstance should you lie to a potential employer about your cancer. If your deception is discovered during the pre-employment process, you probably won’t get the job. Even if your deception works, there is a high probability that you will be found out. For example, when your insurance application is submitted for approval, the insurance company will check your medical records. Thirty days into your new job, your employer will learn that you lied. Even if you don’t get fired, your employer may not trust you again or be willing to give you advancement.
If you are denied a job because of your cancer, you may consider filing a complaint with the federal government. Under the Rehabilitation Act of 1973, any U.S. government contractor or subcontractor receiving $50,000 or more, and with 50 or more employees, is required to prepare and maintain an affirmative action program for the handicapped. Moreover, employers that receive any money from the Department of Health and Human Services are required to maintain such a program regardless of size or amount of money received.
Cancer patients are classified as handicapped under this law. If you suffer job discrimination because of your cancer, you can file a complaint under Section 503 of the Rehabilitation Act with the Office of Federal Contract Compliance Programs of the U.S. Department of Labor. If your complaint involves a contractor for the Department of Health and Human Services, it will fall under Section 504 of the law and should be filed with the Office of Civil Rights at the Department of Health and Human Services. Your state Department of Labor or Office of Civil Rights may also be responsible for enforcing state laws prohibiting discrimination against people with a cancer history.
On the plus side, because you have been recognized as handicapped by the federal government under the Rehabilitation Act of 1973, an employer may be eligible for federal and state job credits, training grants, and other forms of financial assistance as a result of your employment. To find out more, contact your local state Department of Labor before you seek a new job.
If you own a company that does business with the federal, state or city government, it may be eligible for preferential treatment in contract bidding. Companies that are federal contractors or subcontractors may also give preferential treatment to suppliers owned by handicapped persons because it helps them fulfill obligations under federal statutes. It may seem strange to profit from having cancer, but you didn’t decide to get cancer and you didn’t write the laws pertaining to handicapped persons.
The Impact of Laws on Cancer Patients
Laws are the formal rules that run a society. Many federal and state laws affect you as a cancer patient. The U.S. Food and Drug Administration is empowered and governed by laws passed by Congress. The budget for the National Cancer Institute is set each year by an appropriations law passed by Congress.
These laws influence the quality and availability of your health care, what you pay for your care, and many other aspects of your care. It is important for you to know your rights and restrictions under various laws.
The Kidney Cancer Association tracks important legal developments that relate to patient rights and patient care. The Association also educates members of Congress, government agencies, and other organizations about the needs of kidney cancer patients. For example, the Association has organized meetings between patients and members of Congress. The Association has also testified before Congressional hearings on the needs of patients.