When it comes to cancer, there’s good news: People who have cancer are living longer. But when treatment ends, many patients have a plethora of issues that need to be addressed.
Having a survivorship care plan (SCP) and a treatment-history summary can help survivors make a smooth transition and have a healthy life after treatment ends. So says Kim Thiboldeaux, president and CEO of the Cancer Support Community, a nonprofit organization that provides support and education for people impacted by cancer. She points out that there are currently more than 13 million cancer survivors in the U.S.
Thiboldeaux sat down with Healthline to explain the importance of survivor care and planning.
“You are essentially a survivor from the day of diagnosis. A survivorship care plan is what needs to be done post-treatment in making that transition,” she says.
During treatment, cancer patients are plugged in to a support system of doctors, nurses, and social workers. Thiboldeaux says that when they receive the good news that their treatment is finished and that there's no longer evidence of disease, it can be difficult for patients to move forward if they don’t have recommendations for follow-up care.
“Now is the time to get back to a 'normal life.' [But] you can’t get back to normal. It’s a new normal,” says Thiboldeaux. “We’ve not been doing a good job. At the end of treatment, some cancer survivors feel like they are falling off of a cliff."
Recommendations for Individualized SCPs
In a 2006 report titled “From Cancer Patient to Cancer Survivor: Lost in Transition,” the Institute of Medicine (IOM) recommended that every cancer patient receive an individualized SCP. Thiboldeaux says, “There are a lot of new guidelines from different regulatory bodies that state that a patient should be provided with a written treatment summary that they can take with them when they go back to their internist, cardiologist, Ob/Gyn, and other doctors.”
If your healthcare provider does not have a survivorship care plan, you can download and print a template from an organization such as the American Society of Clinical Oncology and ask your doctor to help you fill it out.
According to Thiboldeaux, a treatment summary should contain information about the kind of chemotherapy and the dose patients received, other medications they were given, and information about when patients should get follow-up screenings. In addition, it should take into account the patient's living situation and other illnesses or chronic conditions they may have.
“They need to know what doctor they should see now. Should they go back to their oncologist or internist? What about post treatment medications? What’s the medical surveillance?” she says.
An SCP should also include referrals for treatment of issues related to body image, depression, and other mental health concerns.
A Host of Issues Remain
Cancer survivors have myriad issues and questions related to post-treatment side effects—such as "chemo brain," which is described as a mental fuzziness and a difficulty focusing, and some lingering physiological effects, such as tingling of extremities.
Cancer survivors may also have self-image, self-esteem, and psychosocial issues as a result of scarring and other body issues after treatment, says Thiboldeaux, adding that Issues related to intimacy and relationships are also common.
She notes that many survivors are not aware of late-term post-treatment side effects, such as cardiac issues that don’t present themselves until months or years after treatment ends, and that many patients also fear that their cancer will reoccur. “If they get a headache or a pain, they may be afraid. Some become debilitated by fear of their cancer returning. Patients may experience larger existential issues that may cause them to think they want to change the direction of their life. Sometimes it's hard for them to adapt back to their life before treatment," she says.
Pointing out that the medical establishment has been very focused on the medical side of treating cancer, Thiboldeaux says, “We have to focus on the social, emotional, and spiritual needs.”
Special Concerns for Young Survivors
Children and young-adult cancer survivors have a unique set of issues. Thiboldeaux believes they should be tracked for longer-term "late effects."
Because some cancer treatments can move a woman of childbearing age into premature menopause, Thiboldeaux advises women who are interested in having a family to consider a discussion with their doctors about fertility preservation. “They may want to talk to their doctor about freezing their eggs before they start treatment. There are support networks for them, such as Fertile Hope and the Livestrong Foundation.”
Young adults may also be concerned about relationship and intimacy issues, as well as their professional career track. “At what point do you tell someone you are a cancer survivor? When you are diagnosed with cancer, it can pull you off your professional career track," she says. "They may say, ‘I lost some time on my career path. How do I get back in the loop?’”
A Rosier Post-Cancer Future
On an optimistic note, Thiboldeaux says, “We are on the verge of a significant transformation shift, and we are starting to see support services integrated and mandated. We are beginning to see accrediting bodies recognize SCPs.”
By 2015, the American College of Surgeons’ 1,400 cancer programs are mandated to begin providing patients with SCPs. The American Society of Clinical Oncology (ASCO), the National Comprehensive Cancer Network (NCCN), and the Community Oncology Alliance (COA), have also issued guidance for SCPs. “With SCPs we can help patients who are post-treatment get the best possible outcomes and results,” says Thiboldeaux.
If your provider does not have an SCP, Thiboldeaux recommends using a template from organizations such as Livestrong or ASCO. “Bring the template to your doctor. Patients feel very empowered when they take control. Tell your doctor, "I brought my own SCP—please help me fill it out.”