Strategies for cancer survivorship: practical advice from a doctor and patient

CARA EAST, MD

From the Division of Cardiology, Baylor University Medical Center, Dallas, Texas.

Physicians are welcome to photocopy this article for their patients.

Corresponding author: Cara East, MD, 3434 Swiss Avenue, Suite 203, Dallas, Texas 75204.

While this is not a journey that you would willingly sign up for, it can become a meaningful and enriching part of your life. The first and quite possibly the most important point to make about cancer survivorship is that you are not alone. There are many cancer survivors around you, including people you would have hardly guessed ever had cancer. In addition, the number of survivors continues to grow, as successful therapies produce cures or control of the disease even while many of the underlying causes of cancer remain unknown.

To become a capable survivor, you should avail yourself of all the help you can get. Many of these strategies were suggested to me by other cancer survivors early in my journey. Other strategies evolved because of specific circumstances. Lastly, some strategies come from my own experience as a physician, including my understanding of the medical field. My hope is that these strategies will make the journey easier for others.

MEDICAL PLAN

The most difficult part of this journey is at the beginning, between the moment of diagnosis and the point at which a plan of attack is formulated. This is a time of shock and mourning for the loss of your health. It is also a period of great uncertainty and insecurity. Simply knowing that this time is the worst often makes it more bearable.

This part of your journey will revolve around your physician appointments and additional testing. Begin to ask your physician about potential plans for treatment. You will want to know if surgery, chemotherapy, radiation therapy, or a combination of therapies will be needed. You can ask when treatment will begin and when it is likely to end. You will want to think about whether you should or could continue to work or perform your home duties. Your plan for the next several months will evolve as you discuss options with your physician and as additional testing provides further information about your specific cancer.

As you begin to develop the plan of attack for your cancer, never hesitate to get several opinions. It is reassuring to hear the same options discussed by different physicians. This also allows you to evaluate your method of interacting with the medical profession and will provide you with more options in choosing a physician with whom you can work well and in whom you have confidence. Your relationship with your physician will need to weather some difficult times, and you should strive for the greatest level of comfort possible. In addition, many decisions are based on your doctor's judgment rather than his or her fund of knowledge. Here, the doctor-patient relationship is of utmost importance.

If you are concerned about needing specific therapy that would be provided by a physician or group you are not comfortable with, you should realize that medicine is a profession practiced by many individuals. No physician has a monopoly on standard therapy. Even experimental therapies can be available across long distances or through different physicians. Choose a physician you trust first. Then you can research if experimental or nonstandard therapies are available through that physician or through someone else that physician trusts. Once you have chosen a good physician, you will be able to relax some and know that your physician will do her or his best for you.

PHYSICIAN APPOINTMENTS

You will visit with your physician many times. Despite the best intentions of your providers, waiting room waits may be prolonged, especially if you travel a long distance so that multiple tests and visits may be scheduled on the same day. Do not try to be a model patient in the waiting room. Bring a pillow, a crossword puzzle, homework, or even a small TV, if it would make you more comfortable. As long as you are not too noisy, the staff will appreciate these coping strategies.

As suggested by many self-help publications, it is a good idea to write down your questions and bring them with you to each visit. However, this system works best if you first listen to your physician. Some of your questions may be answered without your asking. Also, if you become too intent on asking your questions, you may not be able to listen well to all that is said, much of which is probably important and some of which may not have occurred to you to ask.

Remember, doctors are not God. They can only help the healing process, and they do not always know all of the answers. It may feel uncomfortable to hear a physician tell you he or she does not know something, but this is preferable to telling you simply what you want to hear.

In going through your therapy, you should also realize that you are not going to die if you do not follow all directions explicitly. Similarly, though, you are not necessarily going to live if you do. You are an individual, and you are the one going through the therapy. Express your wishes to your physician. If some courses of therapy seem too hard for you, explain that to your physician. If you want to try a different or more involved therapy to give yourself every chance of survival, explain that as well. Sometimes patients have more intuitive insight into what is going to work for them. You have chosen a physician you trust. Allow that relationship to evolve and help you help yourself.

TESTING

Throughout your cancer therapy, there will be visits for blood or urine tests, as well as tests to "scan" your body for signs of the cancer cells. Generally, the scans are not difficult, but some can cause discomfort.

Magnetic resonance imaging (MRI) scans appear to raise the most concern. However, the images produced by MRI are often superior to conventional scanning, so you will want to be able to cope with the scanning if possible. The MRI scanner consists of a long tube, which can appear quite claustrophobic upon first look. You may want to ask for the small portable fan available. Keep your eyes closed and imagine being on a beach somewhere. The MRI scanner makes a number of loud knocks, so also ask for the portable earphones so you can listen to music while in the scanner. If still necessary, the physicians can give you medications to relax you, but then you would need someone to drive you home after the test.

One tip I learned the hard way is not to keep your wallet with credit cards or identification badges in your pocket while you are inside the MRI scanner. Magnets can destroy magnetic strip information, making your cards unusable. Staff working with the scanner are careful to ask about any metal on or in your body, but I have yet to find any who ask about these cards.

Waiting for test results can be nerve-wracking. Discuss this with your physician before going for testing and ask to be called with your test results as soon as possible. Most physicians are sensitive to your anxiety. You may even want to schedule scans in the morning and then have an appointment with your physician in the afternoon. Do not wait several days to hear about your scan results if you are going to lose sleep while waiting.

RESOURCES FOR THE MEDICAL PLAN AND TREATMENT
Organizations and the Internet

Additional information regarding specific therapies can be obtained through cancer-related organizations or the Internet. The National Cancer Institute (NCI) provides information on particular cancers and treatment options and can be reached at 1-800-4CANCER. This number is answered by an automated system from which callers can order NCI publications. Alternatively, callers can ask to speak directly with one of the cancer information specialists. Lastly, treatment information provided by the NCI is available by fax at 301-402-5874 or on the Internet at cancernet@icicc.nci.nih.gov. By getting information directly from the NCI, one can rest assured that the information provided is current and correct.

The American Cancer Society (ACS) also provides information regarding early signs or symptoms of cancer and appropriate treatments. It has a number of publications available at no charge. The 1-800-ACS-2345 phone number can also be used to find your local ACS chapter, which can help with transportation or equipment needs for some individuals.

Many Internet sites are available for specific cancers (e.g., The North American Brain Tumor Coalition) or for specific issues (e.g., DES Action USA). The most complete guide to available phone numbers and Internet cancer sites is contained in the book A Cancer Survivor's Almanac, which is published by the National Coalition for Cancer Survivorship and available in most bookstores or from Amazon.com.

One should be circumspect about any information garnered from the Internet, however. A recent review of Internet sites addressing children's cancer showed that some sites were outdated and did not reflect current best practices. Other sites were frankly incorrect. Some sites were simply self-serving, attempting to lure patients to try treatments offered only by that site. Use your Internet searches only as a way to gather information. Review all the information you find with your physician and do not sign up for any treatment until you have all the facts.

For some individuals, medical options are limited by a lack of funding. Each community handles such cases differently, but the ACS can again be a valuable resource. In some communities, foundations provide specific help. In Dallas, breast cancer therapy is available for some through a group called the Bridge. Also, the Make-A-Wish Foundation provides funding so that children with cancer can live their dreams now. Let your physician and staff know your needs and explore all available options.

Books

A number of books can help address your many concerns. Coincidentally, many of the good books have been written by survivors in the Dallas-Fort Worth area. The following books are filled with specific cancer information:

• Harpham WS. When a Parent Has Cancer: A Guide to Caring for Your Children, with Becky and the Worry Cup.
• Harpham WS, Jones R, eds. After Cancer: A Guide to Your New Life.
• Harpham WS, Pilcher AB. Diagnosis Cancer: Your Guide Through the First Few Months.
• Hoffman B, ed. A Cancer Survivor's Almanac: Charting Your Journey.
• Latour K. The Breast Cancer Companion.

Other books can fill the aching emotional needs of this time in your life, the importance of which cannot be overemphasized.

• Albom M. Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson.
• Canfield J, Hansen MV. Chicken Soup for the Soul: 101 Stories to Open the Heart and Rekindle the Spirit. See also all the Chicken Soup sequels.
• Eadie BJ, Taylor C, Morse M. Embraced by the Light.
• Kushner HS. When Bad Things Happen to Good People.
• Marin E. Chemotherapy Gives New Meaning to a Bad Hair Day [cartoons].
• Nixon DW, Zanca JA, DeVita VT. The Cancer Recovery Eating Plan.
• Peck MS. The Road Less Traveled.
• Siegel BS. Love, Medicine, and Miracles.

Other cancer survivors

Other cancer survivors are one of the best resources to help develop your strategies for dealing with cancer. Physicians, nurses, and health care staff unintentionally downplay the difficulties of going through cancer therapy. It is not that they do not care; it is simply difficult for them to fully acknowledge the suffering induced by treatment. If they did, they might not be emotionally capable of guiding their patients through such treatment to remission.

Cancer survivors, on the other hand, can be more realistic about what to expect. Survivors often have tips about handling various aspects of the therapies and can discuss the pros and cons of different options. Most cancer survivors are very generous and will share their experiences with you. This will especially help as you begin therapy. The unknown is much more frightening. An example of a tip provided by a cancer survivor is to get your teeth cleaned before any chemotherapy, as your physician cannot allow you to do this any time your blood cell counts are too low. This is especially important before some hospitalizations, such as for a bone marrow transplant, when you will not be allowed to even brush your teeth when your counts are severely low.

To talk with other cancer survivors, ask your physicians and nurses for names of patients who have already gone through your expected course of therapy. Once you know the survivors are willing to talk, speak with as many of them as possible. My tip is that Friday night is a good night to talk to most individuals. This strategy provides many practical suggestions for your journey and a clear understanding that you are not alone.

Remember that while you will seek advice from your physician, nurses, cancer survivors, and books or Internet addresses, take all advice with a grain of salt. You are a unique individual. What worked for others may not work for you. If you try something that does not work for you, do not be afraid to try something else.

CHANGES TO FACE
Fatigue

Do not let anyone tell you that having cancer is hard. Actually, getting cancer is easy. The treatment to cure the cancer is hard and can cause frustration, anger, or depression as losses occur during cancer therapy.

The most consistent side effect of cancer therapies is fatigue. This can be profound and much more debilitating than the cancer was before it was diagnosed. Fatigue can occur during chemotherapy, during the latter stages of radiation therapy, as a response to major surgery, or as a consequence of the emotional ordeal itself.

The most effective strategy for dealing with fatigue is to give in to it, on your own terms. Dr. Wendy Harpham recommends that each patient learn to nap every day. This will allow you to be involved in some of your usual routine and in reasonably good spirits when active. Getting extra rest may allow your body to recover more readily from the treatments, minimizing secondary infections. It also clearly enhances your daily functioning.

If you held a job at the time of diagnosis, you will have to decide whether you want to continue working during treatment. This is a difficult decision and will depend greatly on the demands of your job. Many cancer survivors do continue to work during therapy but also admit to "bad days" when their colleagues did their work for them. If you have a job with flexible hours and workload, you may be able to continue at a reduced schedule. If you do wish or need to work during therapy, you should know it is a right protected by law. If you do not have to work during therapy, this has the advantage of allowing you to conserve your limited energy and use it in directed ways.

Physical appearance

Other physical changes include changes in appearance. The loss of head hair, which is a part of our beauty and identity, is a great loss. Some chemotherapy regimens, however, do not result in hair loss, so check with your physician.

Some cancer centers provide cold packs to be applied to the scalp during administration of chemotherapy. Ostensibly, this minimizes the delivery of the chemotherapy to the hair follicles, which could prevent hair loss. However, I could find no individuals who could tolerate the cold packs on their head long enough for the treatment to be effective.

The best strategy for dealing with hair loss is to prepare for it proactively. Many patients recommend cutting your hair very short or completely shaving your head at the onset of chemotherapy. You can start wearing your wig and/or scarves then. This allows you to cry hard once. If you wait for your hair to fall out on its own, it may fall out in large clumps at socially embarrassing moments. In addition, you will tend to cry each time a large clump comes out. This strategy was suggested by numerous survivors, both men and women.

Buy a wig matched to your hair color before you lose your hair. Take the wig to your personal hairdresser or barber to cut in the same hairstyle as you currently wear. Always get a cloth cap to wear under the wig to prevent itching, and get several so they can be washed. The synthetic wigs are the easiest to wear and are much less expensive than human hair wigs. In addition, human hair wigs must be styled, and you need to conserve your energy. Synthetic wigs look good, though, for only 3 months. Once you have determined the color and style of synthetic wig that works for you, you can easily purchase an additional wig if needed during therapy. Specific tip: avoid hot air escaping from ovens, as these wigs can and do melt.

Another strategy for head hair loss is to wear scarves or hats. Most scarves available today are pretied and thus very easy to use. The fabrics can be elegant, resulting in a polished look that seems planned. Most individuals will not know you have no hair. Lastly, for men especially, baldness looks fine, although it can be cold. (How do bald men do it?)

Most individuals do not realize that hair loss can be accompanied by burning or tingling in the scalp. Intense chemotherapy regimens can also result in loss of eyebrows and eyelashes. Avoid dusty environments when you have no eyelashes, as much more dirt gets in your eyes during that time. However, why women can lose all their head hair and still have to shave their legs remains a mystery to all in the medical profession.

While your energy must be conserved as much as possible, you will find that people around you will cope with your cancer better if you can maintain a good appearance. Getting plenty of rest and wearing a wig or attractive head cover can be helpful. For women and men, makeup can compensate for the alterations in your appearance, especially the pale appearance of the skin, in part related to your low blood counts. The National Cancer Society, together with the Cosmetic, Toiletry, and Fragrance Association and the National Cosmetology Association, sponsors classes on how to maintain your appearance with minimal effort. These classes are generally available through most medical centers that treat cancer, and they are highly recommended.

Emotional state

The simple diagnosis of cancer carries many subconscious stigmas with it. You may experience shame or embarrassment. This may relate, in part, to the disfiguring surgeries that often accompany the cancer diagnosis. You may experience fear--of the unknown, of pain and suffering, of death. You will have to face the uncertainty that begins the day of diagnosis and continues until you die. We will all die, but the cancer survivor clearly sees the mortality and thus becomes a changed person forever.

There will be days when you will be angry and days you will be sad about your diagnosis and ordeal. Life is not fair. You must realize you have done nothing to "get cancer." Even lung cancer survivors who smoked generally did not know about the cancer-causing potential or addictive qualities of cigarettes when they started smoking. The causes of all other types of cancer are generally unknown.

Allow yourself to feel angry or sad and then go on. If you attempt to keep yourself busy to avoid these feelings, they can resurface later after you are "over the ordeal" and when others expect you to be coping well. It is okay to think about dying, and sometimes this experience can motivate you to complete your will or other plans. It can also motivate you to change your life after you complete your cancer therapy. We will all die, but you will also need a plan for surviving.

Mental state

There may be times, especially during hospitalization, when you become confused or even hallucinate. Your nurses and physicians will help immensely during these times. There are, however, 2 specific tips to note. First, try not to have your credit cards with you during these times to avoid ordering unneeded products from late-night infomercials (a tip I learned the hard way). Also, it is okay to ask the nurses to provide restraints to remind you not to get out of bed during such times. You should even encourage your support persons to ask for restraints, if you are not capable of making good decisions for yourself during that time.

SUPPORT TO HELP YOU THROUGH THE CHANGES
Support persons

Once your medical plan is in place, you will want to mobilize your support persons. One of the great lessons of having cancer is learning to let others help you. This is not natural to most independently functioning adults. However, stubbornly trying to hang on to your accepted life duties could compromise your health. You have to realize that in letting others help you, you are giving them a gift as well.

For others to help you, you will need to become organized. Until you know the plan for your treatment, your friends and family can simply be there to comfort you or to talk about the difficulty of facing the diagnosis. Once your medical plan has been formulated, you can begin to allow friends and family to help with specific needs. They can pick up laundry, shop for wedding and graduation presents, or pick up groceries or prescriptions. Many helpers like to prepare meals that can be frozen until needed. Trusted friends or family members could even pay bills and balance your checkbook. You may need to make a list of all the duties that need to be done during your treatment. This allows you to delegate more effectively. It also allows you to save your meager strength for obligations that are most important: making physician and testing appointments, attending an important reception, or seeing the soccer playoff game for your child.

Once you have a diagnosis of cancer, you will find that your friends will segregate into those who can handle the diagnosis and those who cannot. Some individuals cannot deal with this reminder of their own mortality and will avoid you. Others do not wish to see you weak or ill. You will have to let these friends or family members go for the moment. New friends will come and will appreciate the opportunity to help. A really smart idea is to delegate your list of needs to one friend, who can then assign errands to others, allowing many individuals to help you without feeling they are bothering or imposing on you.

Support groups

Support groups can be very powerful in facing and conquering cancer therapy. Many support groups include both patients who have previously undergone therapy and who are now in remission, as well as individuals who are just starting therapy. Support groups can thus be an excellent source of information. Hearing suggestions from individuals who faced the same problems you are facing is helpful. Seeing and speaking to individuals who are in remission can also be encouraging; they show that there is life after a cancer diagnosis.

One study of breast cancer survivors demonstrated a significantly greater survival rate for individuals attending a support group compared with those who did not attend a support group, regardless of stage or severity of disease. Again, this was not a controlled trial, but the findings were very suggestive of the value of support systems.

Support groups can be found through your physician or through the ACS. "I Can Cope" is a 6- to 8-week educational program, which features speakers who discuss therapies such as radiation therapy or provide tips on nutrition during therapy. An interactive support group that includes patients and their support persons is called Dialogue. There may also be support groups in your area for specific cancers, especially breast, prostate, or ovarian cancer.

Some individuals will not feel comfortable participating in a group format. One-on-one discussion with a cancer survivor can be arranged through ACS's CanSurmount program. Volunteers from the ACS also frequently visit survivors in the hospital, providing specific information to women with newly diagnosed breast cancer (Reach for Recovery) or patients who have recently had bowel or bladder surgery (Ostomy Visitor Program). Most ACS volunteers are cancer survivors themselves and, with the specialized training provided by the ACS, can be excellent sources of information and support.

Joining a support group--especially one that also includes support persons--can be a significant benefit for those who help you as well. Support persons can take comfort from each other's travails, with stories about how to coax a person to eat, how to manage the household alone, and how to manage the uncertainty that deeply affects their lives as well. Sometimes, you need to mobilize the friends of the support person. Books that give you encouragement may also be used to help the support person.

OTHER TIPS
Wills, living wills, and power of attorney

Before any hospitalization for cancer therapy (remembering that most therapy will be given in a clinic, so that only the most intense therapy will occur in the hospital), prepare your will, prepare a living will, and assign a power of attorney. Most lawyers can help you with these duties, and these papers can be very important in protecting yourself and the ones you love. Texas has a new living will form, which allows you to either insist on all available physical support or reject support if you become more ill. The new form is very user friendly and helps you to communicate to your family, caregivers, and friends exactly what your wishes are. The power of attorney should be assigned to someone who you know will observe your wishes. Completing this paperwork will give you peace of mind and control over what happens to you during your treatment.

Mental imaging

A number of books review the use of mental imaging to help therapy kill cancer cells. In one study, children were taught to imagine the chemotherapy or radiation therapy as little "PAC-MANs" streaming through their bodies and eating up all the cancer cells. Children who practiced the technique seemed to have better outcomes, although this was not a double-blind trial. It may be that such imagery simply gives the cancer survivor a sense of control, which is no small gain. Either way, it seems useful to understand exactly how chemotherapy or radiation therapy works to kill your cancer cells, while unfortunately also killing some of the normal cells of the hair follicles, stomach, gut, and bone marrow. The more you can understand about the therapy, the more you can cooperate with your treatment.

THE JOURNEY

These strategies for successful cancer survivorship are just starting points and will be most useful as you begin your journey. As you travel, you will probably discover other points and tips. Hopefully, you will participate in a support group and can become one of the mentors for those still shocked and frightened by the journey that lies in front of them.

Through your experience, you will be transfigured and life will never seem quite the same again. For many, life seems even more precious as cancer transforms them and nudges them to focus on the things that are most important. The lesson of learning to let others help you can also lead you to help others in the next phase of your cancer survivorship.

As your journey continues, remember that we all are going to die. The gift lies in not dying until we die; in living our lives fully in the moment now, which is ours.