Three out of every four American families have at least one family member diagnosed with cancer and one out of six persons over the age of 65 is living with a history of cancer. Empowered by their growing numbers (there are 12 million cancer survivors in the USA alone), people who survive cancer are demanding better communication about and coordination of their care. While survivorship guidelines are currently being refined by the National Comprehensive Cancer Network, many organizations including the Institute of Medicine and American Society of Clinical Oncology can already agree that cancer survivorship care plans are a necessity for the patient. These care plans can fill in the gaps that survivors often feel exist after decreasing their visits with the oncologist and going back to to their primary care provider.
The individualized cancer survivorship care plan (SCP) should include:
- a concise summary of the cancer diagnosis with relevant tumor and staging information
- cancer therapy received
- side effects of therapy that could affect future health
- mental and social, nutritional and other supportive services received
- information about possible late and long-term effects
- recommended screening
- relevant medical information
The SCP may also include:
- details of signs of recurrence
- potential consequences of cancer on marital/partner relationships
- sexual functioning
- employment and parenting
- guidelines for follow-up care
- recommendations for healthy living
- identification of supportive care resources
- information about genetic counseling (if appropriate)
Many monitoring strategies depend on the type of therapy you received and, of course, not everyone's care plans are the same.
For example, if you are a breast cancer survivor, the following questions and answers should be discussed with your team. When to do self breast exams vs. clinical breast exams and when to get mammograms if still indicated. If breast MRI would be useful. GYN exams are also necessary yearly, at least depending if certain chemotherapies were used. Bone density testing might be indicated depending on type of treatment used. Echocardiogram (heart ultrasound) might also be indicated depending on what type of treatment you had and where the cancer was located. Lymphedema (swelling of arm) and neuropathies (numbness or tingling) should be screened for, as well as fatigue, memory issues, weight gain, joint or muscle pain, mood problems, and menopausal symptoms. There is a great deal of diet and exercise advice for cancer survivors as well to go through with their team.
I encourage all survivors to speak with members of their care team, such as primary care physicians and oncologists as well as their nurses and counselors, who can help you today put a care plan together and communicate this to the other members of your team so that you feel well supported and taken care of.
General survivorship websites
American Cancer Society
American Institute for Cancer Research
American Society of Clinical Oncology
Association of Cancer Online Resources
CancerCare, Inc.
Children's Oncology Group
Fertile Hope
IOM
Intercultural Cancer Council
Livestrong/LAF
NCCS
National Comprehensive Cancer Network (NCCN)
National Lymphedema Network
National Patient Advocate Foundation
Oncology Nursing Society site for fatigue
Survivors' Retreat site
The Wellness Community
People Living with Cancer
Jessica Johnston, MD, NCMP
Family Medicine