As this weekend's Cancer Survivorship Symposium, the discussion focused on what survivors need, when and with whom,
Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
At this weekend's 2017 Cancer Survivorship Symposium, the discussion focused on what survivors need, when and with whom. The list of survivors’ follow-up needs is long, and, because cancer affects each person differently, distinct to the person and his or her cancer and treatment.
So where to start. The first thing a survivor needs when treatment ends is a Survivorship Care Plan. While this document should be begin with the day of diagnosis, it is currently given as an exit interview for the patient and gives all the details about the cancer and treatment, including date and stage of cancer at diagnosis and any details that may have affected treatment such as family, economic standing, etc. It looks at physical, emotional, and social needs, and, depending on the template, other issues such as employment.
Critical information on the plan is a listing of the drugs used in treatment and dosage because as time goes on, we are learning more information about late effects of drugs and/or radiation. For example, we know now that some drugs cause second cancers, and patients who had those drugs need to be followed closely. We know that radiation to certain parts of the body may diminish muscles and blood flow over time as atrophy occurs.
It is so logical that a patient would finish treatment with this document, and yet the vast majority don’t – in part because it is not offered. If this is the case for you, ask your oncologist to create one
or print off an online template and do your own. There are multiple templates for care plans, but I recommend the one from Cancer.net, the website of the American Society for Clinical Oncology.
Being followed after treatment, as you read in my last blog, can be confusing because the best professional may be at the cancer center or your primary care provider (PCP). Don’t assume your oncologist is going to be the best person, but he or she may be. It all depends on whether survivorship is part of his or her job. For most it isn’t, but if you were treated at a major cancer center, your oncologist should know who you need to see since it is now required that cancer centers have survivorship programs in place for accreditation. I actually found a PCP who was a cancer suvivor and we discussed our late effects and she researched areas where I asked for more information. But these discussions were usually started by me.
In cancer centers where they tell patients they have survivorship care offered, this could mean one or two support groups. In other centers, you will find cancer-specific clinics to follow you. You may also choose to be followed by your PCP, who may feel more logical to you since you may have had a long relationship before being diagnosed. But most PCPs are not yet trained in survivorship issues. They can follow you with respect to other issues at hand but may not be comfortable with survivorship follow up. Ask around. Ask your oncologist and your PCP who should follow you.
But no matter who will be following you, be sure you are followed for the possible long-term and late effects of the drugs and radiation you had for treatment.
Below is a list of the essential elements of follow-up care. These come from the American College of Physicians. The goals of survivorship care:
· Prevent recurrent and new cancers and other late effects
· Monitor for cancer spread or recurrence
· Assess medical and psychosocial late effects
· Manage consequences of cancer and its treatment
· Coordinate with other doctors, so all health needs are met
· Provide routine health promotion