For the nearly 16 million cancer survivors today, each person’s cancer journey started in a unique way. Mine started one day over Thanksgiving weekend, 2007, when I noticed a lump in my neck. Fear, anxiety and a sudden sense that you’ve lost all control over your life overwhelms nearly every person who has had a cancer diagnosis.
It is in this fog that we attempt to come to terms with the diagnosis and try to discern complicated and technical treatment options. We cling to whatever information or reassurance can serve us best.
There are several elements to making this happen, and one critical component would be to have a cancer care plan at every stage of the cancer journey, from diagnosis to long-term survivorship.
The National Academy of Medicine’s National Cancer Policy Forum places a high value on cancer care plans because they trigger an important decision-making process and facilitate the coordination of active treatment and supportive care. Once patients complete active treatment, they may transition to survivorship care, which includes monitoring for the effects of the cancer treatment, recurrence, and follow-up care. Care plans give patients and families a way to navigate each transition.
That is why the National Coalition for Cancer Survivorship (NCCS) is working with Rep. Mark DeSaulnier and Rep. Ted Poe, both cancer survivors and co-chairs of the Congressional Cancer Survivors Caucus, on the bipartisan Cancer Care Planning and Communication Act. The legislation would encourage cancer care teams to develop a comprehensive care plan to help cancer patients and survivors on Medicare to navigate their care, both during and after treatment. With Medicare beneficiaries making up 60% of all people with a cancer diagnosis in the U.S., millions more patients would receive a comprehensive care plan, with the hope that other insurers will eventually follow Medicare’s lead.
At NCCS, we often hear from survivors that the transition from treatment to survivorship was in many ways their most difficult time, suddenly navigating one’s new normal independent of the structure of the cancer care team that we’d come to depend on. I am grateful I received excellent treatment but recognize the benefits of a care plan to smooth that transition and provide an overview of my experience to all my future health care providers.
Whether we count the time from our diagnosis in days, months, or years, each survivor knows that the physical and emotional trauma of cancer never completely goes away. A comprehensive cancer care plan is an important tool to help cope at every step, ensuring necessary communication takes place, coordinating care among numerous providers, and giving us a little clarity during one of the most stressful and uncertain times in our lives.