It's never too soon to prepare for life after cancer
Many patients are overwhelmed when they learn they have cancer, and studies show it's difficult to absorb information about their diagnosis. Then, as they focus on getting through treatment, they may not think to ask their healthcare team about life beyond cancer.
Since the time after initial treatment ends has become recognized as its own, distinct phase of the cancer experience, those who study cancer survivors have suggested a strategy for the ongoing clinical care of cancer survivors. At the heart of this strategy is a survivorship care plan (SCP), a document that includes details not only about the patient's diagnosis and treatment but also essential information needed for long-term health care.
Designed for discussion at the end of treatment, the SCP should include summaries of key diagnostic and staging results, treatments and dosages received, as well as the potential late effects of those treatments. It should prompt discussion about recurrent and new cancers; genetic implications; possible long-term and late effects; explanations of legal rights affecting employment and insurance; recommendations for nutrition, exercise, lifestyle changes and rehabilitation; and referrals for psychological and support assessments.
Who's In Charge
With today's complicated healthcare system, ever-changing insurance coverage and plethora of specialists, it’s hard to keep up with medical history and long-term follow-up appointments, not to mention the standard screening and physical needs that accompany aging. More oncologists are connecting with patients' primary care physicians after treatment because they will be resuming care after a set period of follow-up by the oncologist.
Unfortunately, primary care doctors are not fully versed in the follow-up requirements for patients whose medical history includes cancer, so it's important that patients inform their primary care doctor about their unique needs or find one who is willing to collaborate with their oncologist to better understand those needs.
Until SCPs become more widely implemented, patients may have to gather the information they need on their own and choose a primary care physician who will commit to following their health care with an understanding of their cancer history.
Where and When to Begin
It's never too soon to start gathering the information that will become part of the SCP. Patients can view several SCPs by visiting curetoday.com/survivorship_resources. A number of organizations offer plans that can be accessed online, including the Abramson Cancer Center of the University of Pennsylvania, Memorial Sloan-Kettering Cancer Center and The American Journal of Nursing. Many SCPs are designed for use by healthcare professionals, but some can be initiated by patients.
At their next oncology appointment, patients should ask for relevant information or explanations of anything that is not clearly understood about their diagnosis and treatment. They may have to ask for copies of pathology reports and treatment drugs and dosages. They should ask healthcare personnel to translate medical terminology into understandable language.
After the SCP is completed, patients may want to make copies and have them available for other healthcare providers and family members.
As time progresses, patients should ask for updates to their SCP at follow-up oncology appointments. Theyt should be specific about any facts that are needed to complete the SCP, and question members of the healthcare team about decisions today that may have lingering effects long into the future. In addition, patients should:
> Be sure their family members understand any genetic implications cancer has for their lives.
> Ask if any new information should be added, especially concerning late effects of the drugs or radiation that were part of treatment and any associated tests on surveillance measures that are needed.
> Ask if any new information is available that may change plans for surveillance or prevention of cancer recurrence.