Support for Young Adults with Cancer
Survivorship
Many people think that once you finish treatment, your life goes “back to normal.” Not so much. Though you may be past the scariest part of cancer, you can expect your life to look different. Adjusting to life after cancer can feel like a paradox. On one hand, you beat cancer, but you may still be struggling with fatigue, scars, post-traumatic stress disorder (PTSD) and feeling disconnected from your previous life before cancer. The following explores parts of your life that are now your “new normal.”
Ongoing Monitoring
Instead of focusing on treatment, you will have ongoing monitoring that includes frequent follow-up appointments for blood work and imaging scans. The frequency of these checkups will be determined by your health care provider and should be included in your survivorship plan.
Survivorship Plan
Doing what you can to stay healthy will be a lifelong goal, and it is easier with a plan. Not all young adult survivors report receiving a survivorship plan. If your health care provider doesn’t mention a survivorship care plan, insist on discussing it. You can start your own by downloading a blank survivorship/follow-up care plan at PatientResource.com/SurvivorshipPlan.pdf
In general, your plan should include the following.
A complete record of your cancer treatment history including your health care provider. This should include the cancer type, subtype and tumor site(s); stage or classification; date of diagnosis; diagnostic test results and pathology reports; and, if applicable, tumor grade, molecular biomarkers present, genetic test results, hormonal status and a summary of second/third opinions. Share this information with any new doctor that you see so they have a complete understanding of your medical history.
Follow-up care. This plan should provide the following information:
- A schedule of necessary medical appointments for ongoing monitoring. Sometimes signs of recurrence can only be seen on lab work or scans, making it extremely important to make and keep all follow-up appointments.
- Contact information for your health care provider and other health care professionals responsible for your care moving forward.
- Maintenance medications or therapies, including type, dosage, frequency and duration.
- Referral(s) for cancer rehabilitation, such as physical or occupational therapy, speech therapy, a lymphedema specialist or others.
- Recommended screening guidelines for other types of cancer. Once you have had cancer, you are at risk of developing other cancers. Follow-up appointments are also crucial to catching a recurrence early, watching for treatment resistance and screening for secondary cancers.
- Long-term treatment-related side effects and late effects (what to watch for, when they might occur and the appropriate action to take). Some late effects disappear over time, while others may be permanent. Some can even develop without warning years later.
- Vaccinations such as influenza and HPV. What is recommended for one person may not be appropriate for another. Be sure your health care provider or pharmacist is familiar with your medical history and current treatments.
Healthy lifestyle recommendations. Healthy eating and engaging in physical activity during and after your treatment may help reduce the risk of cancer recurrence or secondary cancers. These choices assist you with improving other health conditions, such as obesity, heart disease and diabetes, which have been linked to cancer. If your health care team doesn’t include a dietitian, ask for a referral for nutritional counseling.
Monitor your mental health. After treatment ends, you may feel emotions you did not experience after diagnosis. You are at risk of anxiety and depression, especially if your appearance has changed or you are unable to go to school or work after treatment ends. If you are struggling with your mental health months or even years after treatment ends, do not hesitate to contact your health care team for a referral to a mental health professional who specializes in seeing people who have had cancer.
Support system resources. You may feel lost or isolated without the many cancer-
related activities that have kept you busy. Other survivors can offer suggestions for reducing the stress and anxiety (scanxiety) surrounding follow-up appointments and the possibility of recurrence, resources to lessen the financial burden of cancer, social opportunities and more.
Keep up with your pre-diagnosis relationships, too, even if it takes some extra effort on your part. Your friends may have a difficult time with your illness. Give them some grace. Educate them on what you’re going through and let them know their friendship is important to you.
Giving back. As a survivor, you may find it rewarding to share what you’ve learned with the cancer community. Consider getting involved with an organization that helps educate and support other young adults affected by cancer. Be a peer-to-peer buddy who talks with other survivors on the phone, online or in person. Sometimes simply sharing your story is enough to remind other survivors that they aren’t alone.
