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.
Before Treatment
- 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.
During Treatment
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
- Nausea/vomiting/appetite changes
- Fatigue
- Headaches
- Cataracts
- 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
- Concerns about memory loss and cognitive function (“chemo brain”)
- 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.
- Hair loss
- Weight gain or loss
- Sleep problems
- Constipation/diarrhea
- 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.
- Infertility
- 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.
If You Can: Keep Working
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.
After Treatment
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
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Bladder cancer survivors are urged to be patient when it comes to readjusting to life after cancer, as side effects of treatment can vary but often improve with time. Radiation treatments can result in blood in the urine or stools, and chemotherapy can yield numbness/tingling/pain in the hands and feet (peripheral neuropathy), hair loss, difficulty concentrating or fatigue. Survivors who had surgery may find it challenging adjusting to a bladder with reduced capacity or learning to care for and manage a reconstruction. Don’t try to do too much at once; instead, set small, short-term goals. Always discuss any health concerns and symptoms with your doctor.
Lifestyle changes may be in order. Because bladder cancer patients may have lower levels of selenium and vitamins A, C, and E, it is especially important to eat a healthy diet rich in fruits and vegetables incorporating these and other vitamins. Drinking six to eight 8-ounce glasses of water and other liquids day can keep survivors well hydrated and decrease the risk of urinary infection. Quit smoking if you still smoke. Exercise can help maintain or achieve a healthy weight and stave off depression. Try to avoid stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammograms and colonoscopies.
The Brady Urological Institute at Johns Hopkins has an extensive website devoted to bladder cancer. The Bladder Cancer Advocacy Network lists resources and support groups available to patients and survivors.
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Brain cancer survivors should allow extra time to recover -- your body and brain need time to heal after treatment. You may have permanent scars or hair loss, and you may not be able to resume your lifestyle activities at the same pace. Side effects of treatment may linger for months or years. You may have residual side effects including headaches, motor and sensory loss, fatigue, and difficulty with memory, speech or cognition. Always discuss any health concerns and symptoms with your doctor.
Brain tumor patients have difficulty with cognition for several reasons: the brain is taxed by the tumor, surgery, medications, radiation, and chemotherapy all in a short time. Writing down lists or tasks, or placing signs around your home reminding you to do things like lock the door and when to take your medications, can help. Ask friends or family members to help out with tasks like balancing your checkbook that might seem difficult. Your doctor or nurse can give you advice, or refer you to occupational and speech therapists for additional support if necessary.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammograms and colonoscopies.
The Johns Hopkins Comprehensive Brain Tumor Center is one of the largest brain tumor treatment and research centers in the world. Experts there treat an extremely large number of patients affected by all types of brain tumors and tailor the best, most advanced therapies that each unique tumor demands. There are many useful organizations to help, too. The American Brain Tumor Association to has information on brain tumor research and support groups, and a section for caregivers. The Healing Exchange Brain Trust runs a number of online support groups.
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For many patients like Elissa Bantug, a two-time breast cancer survivor and program coordinator of the Johns Hopkins Breast Cancer Survivorship Program, living through treatment is only half the story.
Regaining a sense of balance and normalcy afterward can be as challenging as the disease itself. The reality for a majority of patients is there are a number of short- and long-term physical and psychological effects to cope with following medical treatment for breast cancer. And, complicating things further, there is no organized system in place to ensure communication between a woman’s cancer specialist and primary care provider once treatment is completed.
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Cervical cancer survivors may have lingering or permanent side effects from therapy and many may have to create a new “normal.” Give your body time to heal and adjust and be patient. Always discuss any health concerns and symptoms with your doctor.
Premenopausal women who had their ovaries removed or irradiated will likely experience menopause and related symptoms such as hot flashes, vaginal dryness, and irritability. Talk to your doctor to see if hormone replacement therapy would be beneficial.
Your sexuality also may be affected by your cancer and its treatment. Surgery and radiation can result in vaginal shortening; radiation also may cause your vagina to become scarred and dryer – changes increasing your risk of bleeding with intercourse. Using a dilator and having open discussions with your partner can help.
Radiation can lead to other long-term side effects, including bladder irritation, blood in the urine, bowel irritation leading to diarrhea or blood in the stools.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. It is especially important to stop smoking, as smoking increases the risk of cervical cancer recurring. Limit alcohol intake. Keep up with screenings for other cancers, like mammograms 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, offering comprehensive, state-of-the-art cervical cancer diagnosis and treatment. The National Cervical Cancer Coalition’s website provides information and resources for cervical cancer patients and resources, including a section on survivor stories.The Society for Gynecologic Oncology’s website 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.
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Ewing’s sarcoma patients will be monitored with x-rays of the original tumor every three to six months for three to five years. Similarly, patients will have regular CT scans of the lungs and periodic bone scans to detect recurrence as early as possible. For the rest of their lives, patients will have yearly x-rays of the area of the original tumor to monitor any reconstructive devices and healing of the limb. Exercises may be suggested to increase the function of the affected limb.
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Even after treatment finishes, head and neck cancer survivors may have residual side effects including fatigue, difficulty swallowing, dryness or ulcers of the mouth, arm weakness, numbness/tingling/pain in the hands and feet (peripheral neuropathy), and difficulty concentrating. Remember that your body needs time to heal and adjust. It is normal for effects like fatigue to last for up to a year. Always discuss any health concerns and symptoms with your doctor.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammograms and colonoscopies.
The Johns Hopkins Head and Neck Cancer Center provides comprehensive care in treatment and post-treatment services for patients with head and neck cancer as well as access to the latest, most promising therapies. The website for Support for Patients with Oral and Head and Neck Cancer (SPOHNC) features information on clinical trials, support groups and volunteer survivor stories. The Head and Neck Cancer Alliance provides support and resources to head and neck cancer patients. The International Association of Laryngectomees maintains a website with resources for laryngectomees and holds conferences for laryngectomees.
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Kidney cancer survivors should be patient when recovering after treatment: Your body needs time to heal and adjust. You may have long-term side effects like pain at the site of surgery incision, numbness/tingling/pain in the hands and feet (peripheral neuropathy), difficulty concentrating, fatigue, and night sweats. Fatigue can last for up to a year, especially if you had treatments following surgery. Always discuss any health concerns and symptoms with your doctor.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammograms and colonoscopies.
The Brady Urological Institute at Johns Hopkins has a website devoted to kidney cancer. The Kidney Cancer Association provides information and resources about kidney cancer including a website for survivors
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Even if you’re in remission, the effects of your leukemia and your leukemia treatment can last for many years. For instance, a growing number of studies show that the treatments you received as part of your leukemia therapy can lead to health problems later in life. These “late effects,” which can occur in pediatric and adult leukemia survivors, include learning disabilities, poor work performance, psychological distress and health insurance discrimination. A patient’s age at the time of treatment, and his/her overall level of health, and type and duration of therapy, may affect the risk of developing a long-term effect. Always discuss any health concerns and symptoms with your doctor.
Other long-term effects include:
- Development of a secondary cancer – Exposure to chemotherapy agents such as VePesid, Adriamycin, Blenoxane, Oncovin, Velban, Cytoxan, and corticosteroids has been associated with developing a secondary cancer, especially if the patient also had radiation therapy. The most frequent secondary cancer is skin cancer, so leukemia survivors should be checked annually by a dermatologist. High doses of Cytoxan and VePesid have been linked to the development of AML or MDS. Young women who had radiation to the chest area may be at higher risk of breast cancer later in life. Report any new or unusual symptoms to your doctor, and schedule routine screenings like mammograms and colonoscopies.
- Peripheral neuropathy – Peripheral neuropathy, or numbness, tingling or pain in the hands and feet, can last months after therapy with agents such as Oncovin.
- Heart problems – Heart failure and heart muscle injury can result soon or years after therapy with drugs such as Adriamycin, high doses of Cytoxan, or from radiation to the chest.
- Lung problems – Alkylating agents, Blenoxane and radiation can lead to lung tissue injury.
- Bone damage – Chemotherapy or corticosteroid treatment can lead to osteopenia and osteoporosis – signs of decreased bone density, increasing the risk of fractures.
- Premature ovarian failure/early menopause/male sterility – High-dose chemotherapy for leukemia associated with a bone marrow/stem cell transplant can cause premature menopause and create fertility problems in women. Men may experience temporary or lasting sterility.
- Thyroid damage – Radiation therapy can render the thyroid gland underactive.
- Cognitive effects/fatigue
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammographies and colonoscopies.
Read more about the Michael J. Garil Leukemia Survivors Program at Johns Hopkins Kimmel Cancer Center. Read a booklet by the National Cancer Institute, “What You Need to Know About Leukemia”. The Leukemia and Lymphoma Society provides information and resources for patients and survivors.
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Lung cancer survivors may have lingering effects including anxiety and depression. They also may have physical effects: radiation to the lungs during treatment can result in cardiac toxicities that cause symptoms of heart failure years later, and the chemotherapy medication Platinol-AQ may cause long-term neuropathy (numbness and tingling pain) or hearing loss. Always discuss any health concerns and symptoms with your doctor.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammographies and colonoscopies.
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Lymphoma survivors may have lingering side effects such as bone or joint pain, numbness and tingling of the hands and feet (peripheral neuropathy), difficulty concentrating, fatigue, hot flashes, or night sweats. Remember that your body needs time to recover; effects like fatigue may last for a year or more. Premenopausal women may experience menopausal symptoms. Always discuss any health concerns and symptoms with your doctor.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammographies and colonoscopies.
Patients with non-Hodgkin’s and Hodgkin’s lymphomas are managed by the faculty of the Division of Hematologic Malignancies at the Sidney Kimmel Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital. More information on our Blood and Bone Marrow Cancers Program. The Lymphoma Research Foundation and The Leukemia and Lymphoma Society provide information and resources for patients and survivors.
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Pancreatic cancer survivors may create a new “normal,” as it can take time to recover. They may have permanent scars on their bodies or find it more difficult to do certain things. Treatment for those who could not have surgery may be ongoing, and side effects may continue for an extended period after treatment ends. These include:
- Changes in bowel function -- Pancreatic cancer or its treatment may result in diarrhea, as there is a decrease in the amount of enzymes being produced by the pancreas to help with digestion. Some survivors may need pancreatic enzyme supplements to manage this. Your doctor, nurse or oncology dietitian can help.
- Managing diabetes – Pancreatic cancer patients may develop diabetes from the disease or treatments, especially surgery. If this happens, it is important to be evaluated by healthcare providers specializing in diabetes management. A dietitian familiar with both diabetes and cancer can help you manage your nutritional needs.
- Altered digestion – Surgery, chemotherapy or radiation can result in altered digestion, such as poor appetite, weight loss, abdominal bloating or excess gas. An oncology dietitian can help you get the nutrition you need while managing these issues.
- Pain – Some survivors have significant pain from pancreatic cancer even when treatment is finished.
- Nervous system changes/neuropathy, pain, fatigue
Many pancreatic cancer patients, unfortunately, are never cured of their disease. Even after successful surgery, the cancer may recur. Always discuss any health concerns and symptoms with your doctor. While staying informed about your illness and treatment is essential, it also is important to try to regain a personal balance by eating healthy, exercising, reducing stress and finding sources of support. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammographies and colonoscopies.
The Skip Viragh Center for Pancreatic Cancer and Clinical Research and Patient Care at Johns Hopkins Kimmel Cancer Center has an extensive website devoted to pancreatic cancer. The Pancreatic Cancer Action Network (PanCAN) offers information about pancreatic cancer, including survivor stories and support groups. Pancreatica offers news and information regarding pancreatic cancer fund-raising events, clinical trials and medical treatments.
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Survivors of cancer of the stomach and esophagus may find many changes to their bodies from their cancers and treatments. Some side effects such as fatigue, loss of appetite, joint pain, numbness and tingling of the hands and feet (peripheral neuropathy), and anemia can linger after treatment; fatigue can last for up to a year. Be patient and allow your body time to heal and adjust. Always discuss any health concerns and symptoms with your doctor.
Pain levels can vary after treatments. Pain following surgery generally is short term, while some patients also experience chronic pain. Your doctor can help prescribe the pain-relieving medication that is right for you. Some patients find holistic methods like acupuncture, meditation, yoga or hypnosis helpful.
Surgery and treatments affecting the digestive tract impact the body’s gastrointestinal function. Following surgery, many patients do not feel as well after eating some foods or large meals. Energy levels usually return slowly, partly because of anemia and partly because the body may not have the ability to properly digest food and extract the nutrition needed to keep you active.
Survivors who have had a gastrectomy or esophagectomy should follow a special diet, called a postgastrectomy diet, to help slow down the rate at which food travels through the gastrointestinal tract. This gives the body more time to digest food and pull out the nutrients you need.
As you recover, take charge of your health by eating healthy, exercising and reducing stress. Avoid tobacco and limit alcohol intake. Keep up with screenings for other cancers, like mammographies and colonoscopies.
Experts with the Esophageal Cancer Program at Johns Hopkins Kimmel Cancer Center treat more esophageal cancer patients than any other local medical center. Our researchers are covering new ground in the treatment of all types of cancer, including esophageal cancer. The staff at Johns Hopkins are experts, in many cases nationally and internationally known, in esophageal cancer and how to treat it. The Johns Hopkins Cancer Surgery Second Opinion Program offers people recently diagnosed with esophageal or gastric cancer the ability to consult with some of the leading experts in cancer surgery.
There are a variety of national support groups for both esophageal and stomach cancer survivors. The Esophageal Cancer Awareness Association’s website has information and resources about esophageal cancer, including a section for survivors. The Esophageal Cancer Action Network,, founded by a Johns Hopkins patient and his family, provides support and resources for esophageal cancer patients, caregivers and survivors.
No Stomach for Cancer provides information and support for stomach cancer patients and their caregivers. Can’t Stomach Cancer is a nonprofit organization dedicated to advancing funding for stomach cancer research, providing education and support for patients and their families, and creating awareness about the disease. The organization’s website features survivor stories, and offers a toll-free hotline to assist patients and their families.
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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.