Survivorship: A Plan for Living
Last updated: June 2023
Part I of this article broadly covers survivorship plans. Part II introduces thought-provoking concepts for patients to consider in developing their own plans.
It has been more than 10 years since the Institute of Medicine recommended healthcare teams develop a personalized survivorship plan for cancer patients in the report, “From Cancer Patient to Cancer Survivor: Lost in Transition.” Survivorship plans are not only recommended but even required by many organizations. However, uncertainty about what to include in such a plan, confusion about who is responsible for creating the plan, bureaucratic billing and other issues have resulted in few patients actually receiving their survivorship plan.
The Commission on Cancer’s goal is that by the end of this year, survivorship plans be developed for half of eligible patients. By the end of 2018, the goal is to provide survivorship plans to 75 percent of eligible patients.
Understanding Survivorship Plans
Initially, it was understood that every cancer patient needs a survivorship plan. However, the Commission on Cancer clarified that, although every person diagnosed with cancer is considered a survivor, only cancer patients who have completed active treatment should receive a plan. In other words, lung cancer patients with metastatic cancer are exempt from this standard practice.
However, as a cancer survivor/advocate, I think every cancer patient needs their own plan. Free online tools are available for patients to develop their own plan, if the health care team does not. Even if the health care team creates a survivorship plan, the patient may want to enhance it or create one with a different focus, such as setting meaningful goals and objectives and listing next steps to accomplish them.
Basic survivorship plans focus on the following five areas:
- Summary of Cancer Diagnosis and Treatment
- Short and Long-Term Side Effects of Treatment
- Recommendations for Monitoring Cancer Recurrence and Secondary Cancers
- Advice for Fitness, Dietary and Healthy Lifestyle Choices
- Resources for Employment, Insurance and Psychological Support Assistance
When I was in treatment, I wanted to know everything about my cancer and treatment. Some patients, however, do not want to know the details about either. Even so, it is important that you have a summary of your cancer diagnosis (Small Cell or Non-Small Cell, etc.) and treatment. This information will be invaluable to medical teams who may treat you in the future. It will also be relevant for any opportunities to enter clinical trials.
Some treatments that cancer patients undergo can actually cause secondary cancers. Understanding these risks that resulted from your course of treatment may help your medical team and you recognize symptoms early. Likewise, there may be room for personalization, but there are standards for monitoring cancer recurrence even after you are declared “cured.” As a 12-year lung cancer survivor, I continue to receive annual CT scans. Even though my oncologist suggested these scans may not be necessary, I have a psychological need to peek inside my lungs at least once a year. Discuss with your doctor the right monitoring plan for you.
Preparing for Life after Treatment
Of course, a plan for surviving must include advice for living a healthy lifestyle, as well as practical information regarding re-entering the workforce after treatment, dealing with insurance nightmares understanding available resources for emotional needs, such as joining a support group or seeking professional help if symptoms of depression develop.
Below are links for more information about survivorship plans:
- ASCO Cancer Treatment and After Care Plans
- Survivorship Care Plans and the 2016 Cancer Survivorship Symposium
- Life After Cancer (ASCO and Conquer Cancer Foundation)
- ASCO Answers Guide to Cancer Survivorship
- American Cancer Society on After Cancer Care Plans
- Journey Forward After Cancer Care Plan
- Commission on Cancer Advisory on Care Plans
In Part II, we will address some of the following questions: How do you plan for a future with the cloud of lung cancer hanging over your head? How do you plan for a recurrence? Is making a plan for a recurrence a lack of faith? What is most important to you? How can you hope for the best but prepare for the worst?
Beside manner matters! What has your experience been?