Survivorship
Defining survivorship is personal. Some people feel they are survivors immediately after diagnosis. For others, it’s after they’ve finished active treatment, are deemed no evidence of disease or begin maintenance therapy. This article focuses on the “next stage” – however you define it – and how to prioritize yourself moving forward.
Introducing the Survivorship Plan
A survivorship plan is your guidebook for leading a healthy lifestyle throughout your lifetime. Think of it as a life plan for tracking the goals you had before cancer as well as a place to add new goals post-treatment. If your health care provider doesn’t mention a survivorship plan, insist on discussing it. You can start your own by downloading a blank survivorship/follow-up care plan at PatientResource.com/SurvivorshipPlan
Your survivorship plan should include information about the following.
Cancer treatment record. This detailed section 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 and hormonal status; a summary of second/third opinions; and contact information for the health care providers responsible for your care. Share this information with every new health care provider that you see so they have a complete understanding of your medical history.
Follow-up care. This is a schedule of medical appointments for ongoing monitoring. Sometimes signs of recurrence can only be seen on lab work or imaging, making it extremely important to keep all follow-up appointments. Follow-up appointments are also crucial for watching for treatment resistance.
Maintenance medications or therapies. This includes the type, dosage, frequency and duration of all of your treatments.
Referral(s). Many cancer rehabilitation resources are available to you, such as physical or occupational therapy, speech therapy, a lymphedema specialist and others.
Recommended screening guidelines. Because you have had cancer, you are at risk of developing other cancers. Talk with your health care provider about your risk for secondary cancers and when to screen for them.
Long-term side effects. This is a list of potential long-term treatment-related side effects and late effects, including 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. This should also include a plan for watching for the effects of the progressive accumulation of cancer treatments have on your body (cumulative toxicity). This may include evaluation by a cardio-oncologist to monitor your risk of cardiovascular events.
Healthy lifestyle recommendations. A healthy lifestyle, including nutrition, exercise and sleep, may help reduce the risk of cancer recurrence or secondary cancers. It also assists you with improving other health conditions, such as obesity, heart disease and diabetes, which have been linked to cancer. Knowing your recommended vaccinations, such as influenza and HPV, is important. Be sure your health care provider or pharmacist is familiar with your medical history and current treatments.
Monitoring Your Mental Health
Though many people may expect you to “snap back” to your pre-illness self instantly, you may struggle with fatigue, scars or post-traumatic stress disorder (PTSD). You are at risk of anxiety and depression, especially if your appearance has changed or you aren’t able to keep up with school or work after treatment ends. Contact your health care team for a referral to a mental health professional who specializes in seeing people who have had cancer. Consider support groups for people with your type of cancer. 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.
Rejoining the Work Force
Treatment may have required that you take a break from work. Before going back, plan for certain situations. You may have to request adjustments due to long-term effects, such as a flexible schedule, reduced hours or the ability to work from home. You may feel pressured to share details about your absence with coworkers. You don’t have to, but you could if their support and kindness can make your transition easier. Also, you may consider reducing your workload, switching jobs or changing careers altogether. Now is the time to focus on what is best for you.
Going Back to School
Think about ways to have a smooth transition. If it will be difficult to navigate the campus, plan your routes ahead of time. Contact the school administration about modifications, such as leaving books or supplies in the classroom instead of carrying them with you. You may have memory or concentration difficulties. Build in extra study time, and address difficulties early. Ask for extended deadlines or more time to take exams. If you struggle, consider reducing your class load. Look into grants and scholarships that are available to cancer survivors.
3 Social Suggestions
- Friendships. Your friends may have become distant because they didn’t know what to say about your illness. Give them some grace. Educate them on what you’re going through, and let them know their friendship is important to you.
- The dating world. When you are ready to get out there, remember that you don’t have to share your entire medical history with someone right away.
- Sexual relationships. Whether it’s with your long-time partner or a new one, make sure you are physically and emotionally comfortable with yourself first.
