What does a survivorship program do?
Survivorship programs focus on helping people get supportive care—both medical and psychosocial—that gets them through and beyond their cancer. We help with the prevention and management of late and long-term effects that can result from the cancer itself or from its treatment. We help you optimize your new normal.
What kinds of care do you provide?
We work with the whole health care system to address a patient’s needs. Some preparation for survivorship begins at diagnosis. For example, studies show that smoking negatively affects cancer treatment, so we offer links to smoking cessation classes. We counsel people about exercise and weight management throughout treatment.
Depending on the type of cancer and treatment, we may support maintaining fertility for people who haven’t yet started or want to add to a family. Our program brings in nurses for counseling, reproductive endocrinologists and others to try to preserve eggs, embryos and sperm. This has to be done early—if you don’t, you may find that necessary treatments have burned reproductive bridges.
While our work begins at diagnosis, most of it happens after someone has completed active treatment. Survivorship is where you go when you are no longer at high risk of recurrence or dying from your disease.
After acute treatment, we watch for late-onset concerns. We have, at one stop, specialists such as nephrologists, endocrinologists, cardiologists and others skilled in managing the short-term and long-term effects of treatment, including radiation or chemotherapy. We also have sleep specialists who can help with insomnia.
We work with the patient to coordinate screenings and follow-up with other providers. After a cancer diagnosis, some screening exams should be done more often. If a woman now knows that she has a genetic predisposition for breast cancer, for example, we remind her when it’s time for another mammogram.
How does what you do differ from hospice care?
If you have cancer, you will essentially go in one of two directions. One is being a long-term survivor living with risk of recurrence, potential long-term effects or a chronic disease. The other is shorter term and might entail entering hospice care.
The latter involves palliative care, which is more concerned with comfort measures for those living with active disease that will ultimately lead to death. The focus is more on pain control and similar interventions as well as helping individuals and their families transition to a death with dignity.
In general, the problems our patients face are often not directly related to their cancer itself but to their cancer treatment. We do some palliative care, such as relief for nerve pain that can be a side effect of medication. Overall, survivorship is more involved with helping people recover and adjust to their new normal.
What are the most hopeful or inspiring aspects of your work?
The most important is building programs that are acceptable and accessible to our patients and their providers. We want people to take advantage of things that will help them—and help them help themselves.
An example is the sexual health program. Sex is important, but most people with cancer don’t view it as a priority. Yet it can still have profound implications for them, their partners and the emotional well-being of both (see Basics). When you’re able to help someone who otherwise would be having a very difficult time, that is very rewarding.
What challenges do you face in your work?
We face many medical and emotional challenges. Some we can address within the cancer center; others require matching people with services in the community.
Survivors may be anxious about the future and the possibility of recurrence. While most survivors will not die from their cancer, there are still losses that need to be addressed. There may be profound scars that aren’t always physical.
I think survivorship is often neglected. Patients are focused on treating the cancer and the risk of cancer coming back. We need to empower people to ask about survivorship, to think about what we can provide and to get them as much care as they need. For many people, the bulk of the time following a cancer diagnosis will be spent as a survivor.