Creating Cancer Survivorship Plans
Learn more about how cancer survivorship care plans serve as a vital roadmap for important steps such as future therapies, prevention and surveillance
They are people who are working, retiring, relocating, playing pickleball, writing memoirs, traveling and living the good life. And they're doing it all despite having had cancer, an unwelcome but all-too-frequent bump in the twisty, winding road called life.
According to the National Cancer Institute, an estimated 18.1 million cancer survivors live in the United States with about two-thirds of them – more than 10.7 million adults – 65 years or older. Adults older than 85 years of age are the fastest-growing age group of survivors.
While being told that you are cancer free and finished with active treatment is exciting, it also can be scary.
While being told that you are cancer free and finished with active treatment is exciting, it also can be scary. Suddenly, you're alone, without the support and camaraderie you've gotten from nurses, techs, doctors, other staff and fellow patients as you went for frequent chemotherapy, radiation therapy or infusions.
You may still be dealing with ongoing effects of treatment, such as hot flashes or muscle pain. "Going through the cancer experience is emotionally charged and can be very taxing. The fear of cancer recurrence can be terrifying, and any small changes you notice in your body can activate feelings of vulnerability and worry," says Abdalla Sholi, MD, Medical Director of Medical Oncology of UPMC Hillman Cancer Centers in Williamsport, Wellsboro and Coudersport, Pennsylvania.
The need for survivorship care was first addressed in a 2005 Institute of Medicine report titled From Cancer Patient to Cancer Survivor: Lost in Transition, which recommended the creation of individualized plans for care which would continue after active cancer treatment had been completed.
Physician surveys have found that these plans help support the "shared-care model," which shows how oncologists and PCPs can work together to ensure appropriate follow-up care.
This led to a consensus statement, developed in 2006 by the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO), which spelled out best practices and models for survivorship care planning. It also emphasized the need for multidisciplinary survivorship programs and other specialized resources in cancer centers.
Jyoti D. Patel, MD, Professor of Medicine and Medical Director of Thoracic Oncology at the Lurie Cancer Center of Northwestern University in Chicago, points out that once the active treatment phase has been completed, "A cancer survivorship care plan serves as a roadmap for future therapies, emphasizing a team approach to prevention, surveillance, interventions for consequences of cancer or its treatment, and coordination between specialists and primary care physicians (PCPs)."
Physician surveys have found that these plans help support the "shared-care model," which shows how oncologists and PCPs can work together to ensure appropriate follow-up care.
What Survivorship Plans Look Like
Two individualized care plans, combined by some organizations and cancer centers, are developed for each patient/survivor. A Cancer Therapy Treatment Summary lists basic information about your cancer journey, including surgery details, pathology results and type of chemotherapy and radiation treatment.
As patients transition back to their family doctors for ongoing health care, a Survivorship Care Plan (SCP) helps them monitor their condition while alerting them to possible long-term sequelae of treatment (such as bone loss or cardiac abnormalities after specific chemotherapy regimens).
They organize information about follow-up, including frequency of future check-ups and time frames for testing, and clarify which physician is responsible for seeing that they are done. SCPs provide valuable information to survivors and their health care team regarding expected post-treatment health status.
The OncoLife Survivorship Care Plans are available at no cost on Oncolink, the first cancer information website on the internet, which was begun in 1994. The website is a vast repository of subjects, from what to do when you're newly diagnosed to clinical trials and coping skills.
Similar care plans created by The American Society of Clinical Oncology (ASCO) are accessible here. One plan can be used for any cancer, and others are specific for a variety of different ones, including colorectal, lung, lymphoma and prostate. These care plans, also available in Spanish, provide up-to-date information and are added to frequently.
Because creating survivorship care plans is time-consuming, the majority are made by oncology nurses, advanced practice nurse practitioners or physician assistants with only a tiny percentage done by physicians.
They are evidence-based and collate data from the medical literature, established practice guidelines and input and recommendations from experts in the survivorship field.
The SCP gives you comprehensive information about the therapies you received, related risks and what long-term side effects might be experienced such as skin changes, "chemo brain," or tingling or numbness in extremities (neuropathy.)
It includes suggestions for managing these issues and links to helpful resources. Risk reduction and the importance of lifestyle changes such as diet, exercise and smoking cessation are explained with targeted advice on implementing these changes.
The SCP provides information about financial concerns, genetic news related to your specific type of cancer, fears of recurrence and psychosocial interventions such as counseling or support groups.
As an example, along with specifying the treatment given (names and dosages of chemotherapy drugs, surgery such as lumpectomy or mastectomy, type of radiation), the specific plan for a breast cancer survivor will address issues such as:
- Risks related to commonly used medications for breast cancer (i.e., risk of developing heart problems, cataracts or osteoporosis).
- Sexuality and fertility concerns.
- Side effects of taking Tamoxifen (a hormonal treatment taken for 5-10 years by survivors of certain types of breast cancers).
- Recommendations for frequency of mammograms and breast MRIs.
- Individuals who receive treatment at one of the eight cutting-edge cancer centers around the country that are part of the LIVESTRONG Survivorship Centers of Excellence Network or their community affiliates will automatically be given an SCP; patients at most academic medical centers with large oncology programs will usually receive them as well.
No matter where you are treated, if you are not offered one, you should request one from your treatment team or ask if there is a nearby survivorship clinic. You can visit the American Cancer Society's website, which offers excellent resources that may help create your own SCP.
Because creating survivorship care plans is time-consuming, the majority are made by oncology nurses, advanced practice nurse practitioners or physician assistants, with only a tiny percentage done by physicians. Some clinicians may sit with you and have you fill out the form together; the provider does the majority and then it's sent to you or given it to you at your final treatment or follow-up visit.
Many older patients appreciate receiving a hard copy of their SCP. However, these are best viewed and utilized online since this allows you to access web links and resources. The online HealthCare Provider Summary can be shared with other health care team members and is invaluable when you are seeing new physicians or if you relocate and need to find all new providers.
"A survivorship plan is a critical part of the continuance of oncological care for every patient who has gone through cancer treatment," Sholi emphasizes.
Hopefully, as you go on to resume everyday life (and may it be a long and happy one!), the memories and specific details of your treatment will begin to fade, and your Cancer Therapy Treatment Summary/ Survivor Care Plan will provide a concise summary should it be needed.
"Knowledge is power. Information is liberating," said Kofi Annan, the former Secretary General of the United Nations. Survivorship Care Plans empower survivors by providing many tools that will allow them to navigate the challenging and sometimes murky landscape of life after cancer.
