I am a poster child for why everyone who has had cancer needs to work with their doctor(s) to develop and implement a survivorship plan.
Two of my four cancer-related diagnoses were found during routine screenings. Two of my cancer-related diagnoses and one serious heart condition were almost certainly due to late effects of cancer treatment when I was young.
Each was a complete surprise to me, and while there is evidence that predicts most of these occurrences, not one of my doctors used this literature to shape a plan for my post-treatment care.
I was on my own. My fear of yet another recurrence led me over time to cobble together a motley collection of oncologists (one for each body part) and other specialists (cardiologist, dermatologist, endocrinologist, and so forth) to watch over me. I thought I was lucky that this has worked so far.
But since I have become a patient at Memorial Sloan-Kettering’s Adult Long-Term Follow-Up program two years ago and I now have a formal survivorship plan, I know I was lucky. The success of my haphazard plan was most likely due to its “even a stopped clock is right twice a day” approach — an extraordinarily bad use of time and resources, mine and my insurer’s. Now that I am working with a knowledgeable physician, I can see how rudimentary and inadequate my efforts were.
Anyone who has experienced (or witnessed) the impact of a cancer diagnosis and the disruption —physical, emotional and social — of treatment knows that the experience of cancer doesn’t end with that final appointment in the chemotherapy suite.
I am not alone in my lack of a survivorship plan. Most people who complete the initial intense part of treatment for cancer do not have a formal plan for their ongoing care once that phase is over. The aim of care after active treatment is to return the person to health and functioning, prevent a recurrence or detect it early, minimize long-term side effects and treat conditions that result from the toxic effects of chemotherapy, surgery or radiation.
Raising the priority and value of (and insurance coverage for) survivorship care has been the focus of the Office of Cancer Survivorship at the National Cancer Institute, which has funded research to identify the long-term effects of treatment and CDC’s Cancer Survivorship efforts to implement those findings. The National Coalition for Cancer Survivorship has worked with the Institute of Medicine’s Cancer Policy Forum and Congress to define what constitutes survivorship care and eliminate the barriers to its delivery. The American Society of Clinical Oncology has implemented standards for treatment summaries for survivorship care. And the Lance Armstrong Foundation has, in recent years, added on-the-ground muscle to these aims.
Nevertheless, progress toward implementing a personalized survivorship plan for each person treated for cancer in the US seems stalled. There are many reasons for this, most related to the organization and incentives of health care delivery, the knowledge, interest and proclivities of various health professionals and the twin demands of cost control and evidence-based care.
And where does this leave those of us who have completed the first intensive phase of cancer treatment?
Mostly on our own, looking for a knowledgeable oncologist or primary care clinician who is willing to stay on top of the emerging evidence to help us match our risks and needs to the tests and services that will keep us as healthy as possible.
On Monday, March 14, I gave a talk that spells out in detail what we patients (and our loved ones) currently have to do to develop and implement a good, solid survivorship care plan at the Survivorship Planning in an Era of Cost Consciousness meeting sponsored by the National Cancer Institute.
Our role is not a “piece o’ cake,” that’s for sure. Take a look.
I have learned two lessons about survivorship from my experiences as a person living with cancer:
First: regardless of the excellence of the data, the promise of reimbursement and the skill of the physician, if I don’t show up, discuss my risks and my options and then follow through on the decisions I make with my clinician, I will get no benefit from survivorship planning, nor from the tests and technologies that can be used to improve the quality and extend the length of my life.
These are the things only I can do.
And second: I know with complete certainty that regardless of how much expertise, experience, connections and energy I invest in developing and implementing a survivorship plan, I cannot do this alone.
An effective survivorship plan requires an active partnership between the patient and his or her provider.
*This blog post was originally published at CFAH PPF Blog*