16 million cancer survivors in the United States, growing every year. Success stories we never would have imagined even a decade ago.
And yet, when it comes to genuinely understanding the impacts of cancer treatments and what happens over the long term to young and older survivors alike, we are woefully uniformed and under-prepared—and as a nation don’t have a unified plan to address the issue.
That’s my take away nugget from a two day workshop just completed on “Addressing the Adverse Consequences of Cancer Treatment,” convened by the National Cancer Policy Forum, which is part of the National Academies of Sciences, Engineering and Medicine based in Washington DC.
There was way too much information provided during the sessions to accurately summarize here. However, the themes were universal and persistent, and the bottom line was that it is time to address the needs and realities of cancer survivors straight on.
Cancer is a devastating disease. Still too many in this country die every year, however even those who live may have their lives impacted substantially. And the impact is not just the memory of the diagnosis, the devastation that can come with the treatment, and the long term impact on physical, social and mental health. Financial health is impacted as well, with many survivors ending up in bankruptcy.
So as our care for cancer patients improves, and more are successfully treated, why is it that we still don’t appreciate or understand what their needs are and why don’t we have systems and solutions in place to address them?
We need a bold plan to change the trajectory of cancer survivorship. And not just for the patients, but their families and loved ones as well. As we well know, cancer is not just the disease of one person. It can impact entire families, circles of friends and acquaintances, colleagues and communities. As we have experienced just this week, even a nation as we mourn the passing of Alex Trebek.
What has brought us to this state of affairs?
From a fairly simplistic point of view we have focused much more of our combined efforts on the prevention, early detection and treatment of cancer than we have on survivorship. We have not focused anywhere near as much attention on many very important aspects of survival and what happens after the treatment has been completed. It just hasn’t been as high a priority.
So what can we do to resolve the problems of cancer survivorship?
First and foremost, recognize they exist. And recognize they may be different for different people. They may be different for disparate communities than they are for those who have access to care, adequate insurance and money in the bank. They may be different for young children and adolescents/young adults than they are for older adults. The needs in the older population when it comes to they type of care and the desire for intensive care may be different than for younger adults.
Second, although we certainly do have research programs underway, we need to do even more research to understand how people survive cancer. Again, children treated for cancer have a higher success rate of treatment than older adults. However they face a lifetime of challenges, and a high rate of other cancers and serious chronic illnesses developing over a lifetime, not to mention significant financial and mental health challenges. They also may live a long time after their diagnosis and treatment, however their mortality is greater at younger ages as a consequence of their diagnosis and its treatment as they move into adulthood.
Older adults have their particular survivor needs as well. We need to make certain that the oldest of the old have their issues addressed in a compassionate way. We should not assume what someone wants: we should ask, and we don’t. For some, intensive life saving treatment may not be what they choose over comfort for whatever time they have left on this earth. Not everyone wants to endure the side effects of treatment for an additional couple of months or year of survival. We need to appreciate that each person has different goals from treatment, and those goals may shift over time.
We need to get survivorship into the community in a meaningful way. The topic of coordinated care came up repeatedly during the workshop discussions. The reality is that for many people in this country there is no health care “system.” Cancer care can be episodic and disjointed resulting in a tremendous burden put on the patient who finds themselves in the center of a circle of specialists who, in turn, rarely communicate with each other in a coordinated fashion as they deliver care to the person in need.
While some health systems are making efforts to address these disjointed treatment programs, too many circumstances exist that simply don’t have the capacity, the funding and unfortunately the interest to make coordinated, long term care of cancer patients a priority.
Then there is the funding: where will it come from to do the research and provide the care that is desperately needed for cancer survivors?
Oh, yes, it is indeed all about the money. We can literally spend billions to develop new cancer treatments, we can spend billions more getting those treatments to the patient, and we spend paltry pennies by comparison making sure that over the long term we understand the survivorship needs of the patient and offer meaningful care and solutions to address those needs.
Then there is information on what is actually happening to the patient as they progress through their journey, which at times passes over years and multiple locations of care. That was the promise of the electronic health record, and time and again we have realized that these systems are not up to the task of giving us the information we need. And that information may be stored in multiple locations and multiple institutions that simply don’t talk to each other in any coordinated fashion. We have a lot of data, and we can’t coordinate its gathering and analysis to better understand the long term outcomes and impact of modern cancer treatments.
One interesting question kept coming up during the discussions centered around the fact that we live in an age where the internet knows more about us and our preferences than we know about ourselves. That’s how all those targeted ads end up in our email boxes. References to Amazon and Spotify abounded, and who can ignore Tik Tok whose algorithms amazingly predict what we want to watch on our phones.
It is time that we recognize that the needs of survivors require attention. We need to invest in care, research, and application of new ideas to answer questions that need to be answered. We need to admit what we know and what we don’t know, and seek the answers to expand our knowledge so we can better counsel our patients and their families on what they can expect from their cancer as an illness and from its treatment. We need to offer guidance to clinicians who provide much of the long term, “routine” care for patients once they complete their acute treatment.
We are now ushering in a new administration in Washington, one that has previously demonstrated its intense commitment to cancer research and cancer care. For them, it is personal in a very literal way.
So the plea from this writer and many others is that they pay heed to the needs of cancer survivors, and put emphasis not only on improving the treatments for cancer but also on supporting the research, programs and payments that will signal cancer survivorship is every bit as important as trying to cure the disease in the first place.
We can no longer ignore the needs of those who survive their cancer. Time may move on, however the memories and impact never go away for many. We owe them the respect of helping them live their lives with the best quality of life and medical care we can offer, informed by research and awareness that has simply not been as large a priority as it should have been to this moment in time.
We can change this, and we can make a difference for so many cancer survivors. Let’s commit to making it so.