What You Should Know About Cancer Survivorship
Cancer Survivorship begins on the day of diagnosis. Cancer treatment for some can be a long and challenging journey. It is extremely important to see doctors who specialize in your type of cancer. Several published studies have indicated that cancer treatment by specialists at National Cancer Institute-designated centers who manage many patients leads to improved outcomes over treatment from general physicians.
Here are our tips on how best to prepare.
- Appoint an advocate – Identify a family member or friend (or several) who can accompany you to your appointments to help fill out paperwork, take notes, ask questions and speak up for you if you’re feeling ill.
- Check your insurance coverage - Before undergoing any cancer therapies, call your insurance company and tell them of your diagnosis. Ask if your health care providers, hospitals, clinics or medications will be covered. Make sure you understand your deductible requirements. Find out if you or your care providers will be filing claims, and what the procedures are, so you can be reimbursed quickly. Inquire if clinical trials are covered, or medical prostheses such as wigs (“skull prostheses”). If necessary, ask your care provider about financial assistance available to help cover treatment. See our insurance guide for more information (link to insurance section).
- Discuss your hopes and life goals with your health care team – if you want to have children, ask about fertility preservation; if you want to continue working, ask about scheduling treatments to maximize your work schedule. Do not assume that cancer and its treatment will derail your life plans. In most cases, it won’t if you inform your oncology team of your hopes for the future.
- Be informed and empowered – Talk to your oncology specialists about any and all questions you have. Request written educational information as well as recommendations for educational content on the internet that is accurate and credible.
- Decide what you want to share within your place of employment.
- Find a support group for you and your caregivers. Ask your nurse navigator about local support groups that might help, or call the local office of the American Cancer Society. Depending on the type of cancer you have, there may be survivor volunteers available to within the cancer center for support. There are also online support networks, and a growing number of tools and smartphone applications available to help cancer patients manage information about their care and provide friends and family members with status updates.
Understand potential or anticipated side effects – No drugs, even vitamins or aspirin, are free of side effects. If your cancer treatment includes receiving medications you may experience short-term side effects that occur briefly. You may also experience long-term side effects, which begin during treatment and continue after treatment has stopped, or late side effects, which may appear weeks, months or even years after treatment ends. Talk to your health care provider about what to expect or what you are experiencing, even side effects you may be shy about, like sexual dysfunction. Some side effects can be prevented or minimized; request information whenever possible about how to reduce or prevent symptoms.
Common side effects from cancer and related treatments include:
- Nausea/vomiting/appetite changes
- Pain and numbness (peripheral neuropathy)
- Dental/gum issues
- Lymphedema – a buildup of lymph fluid in fatty tissues under the skin
- Musculoskeletal symptoms\
- Bone loss and osteoporosis
- Anemia – a lower than normal number of red blood cells in the blood
- Hair loss
- Weight gain or loss
- Sleep problems
- Heart problems
- New cancers
- Blood clots
- Absence of or irregular menstrual periods
- Menopausal symptoms
- Sexual difficulties – Scars or other changes to the body, or feeling bad about the body can result in a lower sex drive or worries about pain during sex or ability to perform. Your doctors or nurses can answer your questions, help correct any underlying medical issues or direct you to a professional counselor.
- Concerns about memory loss and cognitive function (“chemo brain”)
- Surgery -- You may experience side effects from cancer surgery, including body image changes, pain, or other physical or psychological changes. Talk with your cancer surgeon about what to expect before you undergo your surgery.
- Radiation -- This treatment, if needed, also can cause some side effects, most commonly, fatigue. However, exercising while receiving radiation has proven an effective way to minimize symptoms of fatigue.
- Keep working when you are able. Most cancer patients are able to continue working while they are being treated for cancer. Talk to your supervisor and co-workers about your work needs during cancer treatment. Working maintains a sense of normalcy, reduces stress for many, and can maintain your health insurance and income. Ask your oncology nurse navigator for help scheduling your treatments to dovetail with your work schedule. For example, full-time workers having radiation therapy can schedule appointments at 7 a.m. or 5:30 p.m. to avoid missing work time; such treatments take only 20 minutes. Chemotherapy might be given on a Friday afternoon, allowing the weekend to recover, as drugs may cause side effects 24 hours later. Preventative drugs to avoid side effects from the start also can be incorporated proactively into your treatment plan.
- Eat right. Good nutrition is even more important during and after cancer treatment because the disease and its treatments may affect your ability to tolerate some foods and use the nutrients they contain. Your health care team can discuss good nutrition with you, and there are resources available online through the American Cancer Society and the National Cancer Institute.
- Stay active. Regular physical activity can help manage symptoms like fatigue, improve physical functioning and help you maintain a good outlook.
- Understand side effects and how long they are likely to last. See the list under “During Treatment” for more information.
- Take advantage of this opportunity to step back and reassess your life. Embrace an active role in creating a new “normal” for yourself – set new short- and long-term life goals; don’t postpone joy.
- Transition back to your primary care physician for follow-up medical care. Once acute treatment and short-term monitoring are completed, it will be time to have your long-term cancer survivorship care managed by your primary care physician. There are a few exceptions, such as patients with locally advanced disease or distant metastasis. Your oncology team should give you a treatment summary and a survivorship care plan summarizing your medical treatment to date, and outlining what needs to happen going forward regarding surveillance after treatment, promotion of a healthy lifestyle to reduce the risk of cancer recurrence, and what doctors will conduct follow-up tests. See our primary care section for more information.
- Embrace a healthier lifestyle to reduce the risk of cancer recurring or of developing other diseases. Eat a healthy, varied diet low in fat. Don’t smoke, and limit alcohol intake. Engage in regular physical activity.
- Seek help for emotional/social issues if needed. Stress related to your cancer experience may not go away when treatment ends. Support groups and/or individual therapy can help you manage these feelings. Ask your health provider for a referral to an experienced social worker, psychologist or psychiatrist if necessary. The Harry J. Duffey Family Patient and Family Services Program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins provides professional counseling to our patients, families and caregivers with psychological, emotional, and spiritual needs. For more information, click here (link to http://www.hopkinsmedicine.org/kimmel_cancer_center/patient_information/support_services_counseling.html).
For more information, see the National Cancer Institute guide, “Facing Forward: Life After Cancer Treatment.”
Types of Cancer and What to Know About Cancer Survivorship
- Bladder Cancer
- Brain Cancer
- Breast Cancer
- Cervical Cancer
- Head and Neck Cancer
- Kidney Cancer
- Pancreatic Cancer
- Stomach / Esophageal Cancer
- Uterine Cancer: uterine cancer survivors may face long-term side effects common to many types of cancer, including fatigue, memory/concentration changes, pain, nervous system changes (neuropathy), and lymphedema or swelling. They also may have menopausal symptoms such as hot flashes, vaginal dryness, urinary incontinence, or lack of interest in sex. Young women survivors may have concerns after surgery about losing the ability to have children. Sexual problems generally will not get better on their own. It is beneficial to talk to your doctor, who can correct underlying medical issues or direct you to a professional counselor. Also discuss any other health concerns or symptoms.
Although most women will not face uterine cancer recurrence, it still may be difficult to relax and trust your body. Keep up with information about uterine cancer and try to regain personal balance by eating healthy, exercising, and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammographies and colonoscopies.
The Johns Hopkins Kelly Gynecologic Oncology Service is one of the world leaders in oncology care for women with cancer of the female reproductive tract. The Society for Gynecologic Oncology has a section dedicated to patients, caregivers and survivors. It includes a Survivorship Toolkit with resources to help you organize information about your diagnosis, treatment and long-term follow-up care. The Women’s Cancer Network has an interactive website to inform women about clinical trials and research in gynecologic cancers.