Niharika Dixit, MD, is an oncologist at the Zuckerberg San Francisco General Hospital and Trauma Center and a professor in the Division of Hematology/Oncology at the University of California, San Francisco. Larissa Nekhlyudov, MD, MPH, is a professor of medicine at Harvard Medical School, a practicing internist at the Brigham and Women’s Hospital, and a cancer survivorship physician at the Dana-Farber Cancer Institute. You can follow Dr. Dixit and Dr. Nekhlyudov on X, formerly known as Twitter. View Dr. Nekhlyudov’s disclosures. Dr. Dixit has no relationships to disclose.
After completing cancer treatment, it can sometimes be hard to believe that your treatment is done. What seemed like an endless series of blood tests, scans, and treatment sessions has ended. You were likely following a regular schedule of appointments, and now, you are done. “Congratulations!” your doctor tells you. “See you in 3 months.”
While you take a deep breath, this transition into survivorship can feel bittersweet. You are likely relieved that this active treatment phase is over and are looking forward to returning to a “normal” life. However, you may find that during this “new normal” period, you start experiencing fresh worries about what the future holds. You may also still be experiencing some side effects of treatment. You may be grieving the loss of your support system. During treatment, you may have gotten used to your support system always being around to help during treatment, whether that meant someone was there to take you to appointments or someone would check in on you. And now, that support network is going away.
Survivorship is a time to heal as you enter a less intensive phase of treatment. But you may also feel a sense of uncertainty or loneliness. The following are some strategies to help you through the transition from active treatment to survivorship care.
1: Establish a survivorship care plan with your health care team.
It is important to discuss this next phase of your cancer care with your health care team. While your treatment has ended, you will still have periodic follow-up examinations, blood tests, or scans, such as more frequent mammography, computed tomography (CT), or positron emission tomography (PET) scans. Your health care team should discuss and share a plan with you on how often you need this follow-up care. This is called a survivorship care plan. Your survivorship care plan may be shared with you as a physical document or included in your notes on your patient portal.
Ask your health care team how you can reach out to them if you have any concerns or new symptoms, or if you need a referral to a specialist. If you did not stay in touch with your primary care doctor during treatment, this is also a good time to reconnect. If you do not have a primary care provider, then ask your oncologist to help you find one. During treatment, many of your general health care needs may have been put on hold, so the transition into survivorship is the perfect time to address and schedule some of those regular checkups.
2: Ask your family and friends for help.
Once treatment ends, your family and friends may not realize that you still need help, and you may once again take on a full load of responsibilities at home. This can feel overwhelming, especially if you are still experiencing side effects from cancer treatment, such as pain, fatigue, changes in memory, or numbness and tingling in your hands and feet, called peripheral neuropathy.
Remember that your body is still healing, which means you may need to rest from time to time. You will still need help as you transition into survivorship, so it is important to let your family and friends know that you need their support. While you may not need them to drive you to appointments as often as they did, for example, you may still need their help with managing activities. Or, you may just need them to be available to talk and offer emotional support when you feel overwhelmed. Communicate with your loved ones about what would be most helpful to you as you make the transition from active treatment.
3: Prepare for your return to work.
Many cancer survivors choose to return to work after their more intense phase of treatment is over. For some, returning to work is necessary in order to keep their health insurance, which is often tied to employment in the United States. If you have concerns about returning to work, talk to your oncologist and primary care provider to make sure you are approved for work. In some cases, you may be able to extend your time off from work, ask for accommodations at work, or, if needed, apply for short-term or long-term disability.
Your health care team can also refer you to services, such as physical therapy or occupational therapy, that can help make the transition to work easier, especially if you still have side effects from treatment. Some health care teams also include patient navigators and social workers who can make referrals or provide help with returning to work. Finally, don’t be afraid to ask for accommodations at work if you need them because cancer is defined as a disability under the Americans with Disabilities Act. Learn more about returning to work after cancer.
4: Grow your support system.
The transition to survivorship is a good time to grow your support system. This can include reaching out to other family members and friends with whom you did not have much contact before or during cancer treatment. This may also include finding a support group or a peer support network. These networks can often provide a healing space where you can share your experiences with people who have been through cancer and its treatment and may have had similar experiences. Many cancer survivors find support groups to be an essential part of their healing. However, support groups do not work for everyone. Some cancer survivors do not feel comfortable in a group setting and feel more comfortable discussing their experiences one-on-one.
Many cancer survivors also find community and meaning in volunteering for cancer-related organizations that provide peer support, patient advocacy, or services for ongoing symptoms, such as acupuncture, exercise, and massage. When and if you feel ready, you may want to consider volunteering with such organizations.
Finally, there are online resources, including Cancer.Net and the American Cancer Society’s (ACS) Cancer.org, where you can find reliable and accurate information about some of the issues you may be facing.
5: Try to stay active and eat nutritious foods.
Staying active has been shown to reduce the risk of cancer coming back for many types of cancer. Staying active also has a beneficial impact on non-cancer-related diseases, such as high blood pressure and diabetes. It can also reduce the risk of osteoporosis, improve mood, and help with some persistent side effects of treatment like fatigue. ACS recommends getting 150 to 300 minutes of moderate-intensity exercise or 75 to 150 minutes of vigorous-intensity exercise each week. It is important to choose a physical activity that works for you. This may include walking, yoga, running, or doing Zumba. It is more important to find an activity that appeals to you than to focus on trying to do a specific type of exercise.
It is also important to follow a healthy diet to keep your body as healthy as possible. There are recommendations from the American Society of Clinical Oncology (ASCO) and ACS that recommend reducing red meat intake, eating whole grains, eating more plant-based proteins, and avoiding alcohol as much as possible.
6: Get help if you have difficulty coping with the fear of recurrence.
After completion of treatment, many cancer survivors worry about the cancer returning. This is called a fear of recurrence. When living with fear of recurrence, any new symptoms can feel like a sign of something ominous. To counter this fear, ask your health care team about what symptoms to look out for and when to seek medical attention.
In addition, when pervasive thoughts of the cancer coming back bother you, try to focus instead on how far you have come. Talking to your family, friends, or support group can also help with the feeling of loneliness that can be associated with this fear. Some survivors may find that meditation, art, journaling, and focusing on their breathing technique can be helpful. However, when these thoughts of cancer coming back interfere with your ability to do things that you like to do, you may need to seek help from a mental health professional.
The end of cancer treatment can be a challenging time of transition. Remember that while you will likely not be able to get back to what “normal” was before cancer, you will find that a “new normal” state can eventually be achieved.
