So you’re in remission and you can officially call yourself a cancer survivor. Congratulations for making it through the hardest part of the journey. Now you may be thinking “What comes next?”
Most people don’t think about survivorship until they finish treatment. And it’s only much later, when there hasn’t been a recurrence and they’re not thinking about the cancer so much, that they really contemplate long-term survival. At that point, there can be many questions: What can I do to make sure it doesn’t come back? What if it does? Will I have issues or late or long-term effects from treatment?
The post-cancer recovery period is all about finding a new normal, said Patricia Ganz, M.D., professor of medicine and associate director of the Cancer Center at University of California at Los Angeles: “What will life be like? Who can I count on? Who don’t I want to spend time with? Who brings positivity into my life? Who brings negativity?”
What we’ve learned is it’s not over when it’s over, Ganz said. Survivors may face ongoing symptoms or problems resulting from their initial treatments — pain, fatigue, late effects such as second cancers or organ dysfunction, as well as other chronic diseases. There needs to be a focus on prevention, symptom management, emotional support, and healthy living – and it’s best that the oncologist share the care with a primary care physician.
Psychotherapist Lissa Parsonnet, Ph.D., notes that being treated for cancer can take all of a person’s physical and emotional energy. Once a person begins to feel physically healed, they can start processing the psychosocial impact of the diagnosis and treatment. Emotional ups and downs can be expected after treatment ends.
People often have the expectation that they’ll return to normal very quickly, and some people do, said Parsonnet. But many find they don’t actually go back to the same place – rather they go ahead to a new normal. An experience like cancer alters most people’s lives, changing their perceptions of both themselves and the world. There’s a new sense of vulnerability and a realization that bad things can happen. In many ways the new normal can be even more gratifying, but takes a long time to get there.
LLS shares some advice and resources for survivors:
Expect Psychological Changes
Once you’re in remission, perhaps the most noticeable transition is the psychological affects. It’s common to feel fear, guilt and anxiety in certain situations. When thinking about any aspect of your health, your train of thought may be different now.
This is especially true when you:
- Feel symptoms, even when they turn out to be unrelated to cancer
- Need follow-up visits
- Return to your doctor's office or the hospital where your most fearful memories may have taken place
- Reach a milestone anniversary of being diagnosed or being in remission
Any of these events can provoke feelings of worry or sadness, but often times, even a non-cancer-related event as simple as running into old friends or grocery shopping can trigger unhealthy thoughts.
Some mental health professionals believe that the most difficult transition is the period immediately following cancer treatment. Adjusting to taking care of oneself without the regular support of an oncology team can seem like an uphill battle.
Additionally, it’s common for colleagues and even loved ones to expect patients to return to their “normal” right away, without really understanding everything you’ve gone through. The good news is that in time, cancer survivors generally find it gets easier and easier to deal with the psychological changes once they’ve accepted their new normal.
Joining a support group and staying connected with other cancer survivors has been proven to be very helpful.
Brian L., a blood cancer survivor who has gone on to complete a marathon and triathlon, says his best advice is to join a local support group. “I’ve been going to the LLS support group for the past five years, and it’s been huge for me to connect and network with other survivors - to share our stories, because we’re not always comfortable sharing with our friends or family. Find those local resources and use them.”
Have an End-of-Treatment Plan
After treatment, it’s also important that your oncology team provide you and your doctors with a survivorship care plan. Your plan should include a list of cancer treatments you’ve received, a detailed plan for ongoing care, and any recommendations for management of any other health problems. Other components that may be included are, tips for maintaining a healthy lifestyle, follow-up appointment schedules, and any other specific information that is unique to your cancer diagnosis or treatment. The goal is to ensure that you continue to receive the best possible healthcare.
“People may lose touch with their original doctors but it’s important to know what treatments you had in the past and be able to map out whether there may be any late effects you need to think about,” said Ganz.
Healthy lifestyle advice is usually the same across the board for everyone, regardless of disease history - exercise and eat a balanced diet. But for cancer survivors, you will count on additional doctor visits/checkups and health monitoring routines.
Review the following tips from LLS experts to keep yourself healthy, both physically and mentally:
- Talk about how you feel with the doctor at each visit.
- Ask any questions you may have about side effects.
- You may be at a higher risk for infections. Follow the doctor’s advice for preventing infection.
- Eat healthy foods each day. It is okay to eat four or five smaller meals instead of three bigger ones.
- Do not smoke. Patients who smoke should get help to quit.
- Get enough rest.
- Exercise—but first talk with your doctor before starting an exercise program.
- Keep a healthcare file with copies of lab reports and treatment records.
- Have regular cancer screenings.
- Seek medical advice if you feel sad or depressed and your mood does not improve over time. If you feel sad or depressed every day for a two-week period, seek help.
It’s important to do everything anyone should do to stay healthy. In addition to the usual benefits, cancer survivors are often at risk of a secondary cancer. Anything you can do from a behavioral strategy can help reduce that risk.
Importantly, try your best to keep a positive attitude about the future ahead of you, and never forget to commend yourself for making it this far.
Learn more about Life After Diagnosis and Treatment, Follow-Up Care and Survivorship and Long-Term and Late Affects. Find helpful resources on Managing Your Cancer. Watch a video about Cancer Survivorship in Young Adults: Acute Lymphoblastic Leukemia
Learn about local LLS support groups near you. Learn more about treatment options and survivorship issues by attending a blood cancer conference. Join an online discussion board dealing with survivorship issues or an online chat to share experiences.
Visit Journey Forward to start your own care plan and find a library of resources.
Read other blogs and stories about survivorship.