Are we the victims of our own success?
That may be an unusual-and some would say offensive-way to open a discussion of cancer survivorship. I mean it only with the best of intentions, for when it comes to cancer survivorship over the past 40 years, there is much to be grateful for. But that doesn't mean the journey has been without difficulty, and it doesn't mean that there isn't much more to do.
Last week, in Washington, DC, LIVESTRONG brought together over 120 experts on the issues surrounding cancer survivorship to do something reasonable and fairly straightforward: define the essential elements of survivorship that every cancer patient, their loved ones and caregivers should expect once the acute treatment part of their journey has been completed. What's amazing is that no one has been able to do this before.
Having those experts in one room at one place at one time brought into focus the enormous task we face in trying to define those elements, let alone how we configure our systems of care to provide those services in a world where care is becoming more diffuse and resources for anything other than the most necessary care are dwindling on an almost daily basis.
It wasn't always this way.
When I started my oncology training in 1971, there were 3 million cancer survivors alive in the United States (a survivor is defined as someone who has been diagnosed with an invasive cancer). In 2007-based on the most recent data available-there are 11.7 million cancer survivors. In the mid-1970's, the chances of someone who had heard the words "You have cancer" being alive 5 years later was around 50%. Today it is approximately 67%.
When you look at the data showing how survivors are distributed by sex and years following diagnosis, one is struck by the large percentage of men and women are still within the first 5 year part of their journey. And then you notice the "bulge" at the 25 year mark and a smattering of folks in between. Most of those 25 year survivors are women, likely because of breast cancer being diagnosed and treated successfully at a younger age. And they outnumber the men in the 25 year group because many men are diagnosed with lung cancer and sadly most of them don't live even five years. The rest of the men have prostate cancer which is more often diagnosed late in life so they don't live for another 25 years with their disease.
With that "basic" information, how have we been doing when it comes to providing information for those survivors who do live for many years, and to the health professionals providing their care?
The reality is that we don't do well at all. (I am talking here about adult survivors of invasive cancer, since those who care for children with cancer have-for many decades-been much better organized and much more focused on research in these areas.)
The buzz around the room on Thursday and Friday was that we really don't have much evidence to tell us what to do. That's because we haven't done the necessary research to inform us about many of the long term effects of the treatments we administer and the natural course of the cancers themselves. So we are left with a lot of "expert opinion" about what is happening to our long-term adult survivors of cancer, but we don't have a lot of hard facts that experts can agree on.
And it's not just the "hard" stuff-like the effects of treatment-that we need to be concerned about. It's some of the "soft" stuff that may be equally important, like psychosocial evaluation, understanding financial issues, impact on learning abilities and so on that we need to be paying attention to as we expand our horizons to meet the growing needs and expectations of cancer survivors.
Cancer survivors can get lost in the midst of a non-system of care that pays little attention to their long term needs. They can get bounced from active cancer treatment to long term follow-up by well-meaning health professionals who have even less understanding of the long term issues than oncologists. Their health needs change over time, as they develop the chronic illnesses that plague us in throughout this great nation. They become overweight and obese, just like everyone else, piling on additional risks that can impact their health and risks of new cancers. And don't forget that cancer treatments themselves can increase the risk of second cancers.
These are complicated problems that will undoubtedly require complex solutions. But they aren't acute problems, so in many places they get put to the bottom of the pile. They don't belong there.
We have loads of money in this country to treat acute illness. We can use robots to do our surgeries, we can image any part of the body with the most sophisticated technology, we can replace hearts and blood vessels with a snap of a finger any time of day or night. But we can't seem to find a way to provide someone with a chronic, life threatening illness the help they need to understand the stresses of their illness and help them deal with struggles that can last for a lifetime, not to mention transfer their medical information from the oncolgist's office to their primary care health professional so that there is a semblance of continuity in their care.
We do a pretty good job of healing bodies-or at least trying to erase the impact of poor lifelong behaviors or put back the pieces after an acute trauma. But when it comes to dealing with the consequences of those wonders of medicine-particularly the long-term, chronic impact of treatments for diseases like cancer-we just don't seem to give those folks the attention they need and the attention they deserve.
The next steps in the process that LIVESTRONG initiated this past week are to narrow down the "have-to-haves" for cancer survivors' long-term care. Then, hopefully, centers that are committed to cancer patients will have a starting point on which to base their efforts on behalf of those survivors. How that will be paid for is another question, with great hope being placed on unknowns as to how that is going to play out and whether new health care models will set much money aside to provide long-term guidance for patients in need, such as cancer survivors.
Survivorship is now beginning to get the attention it deserves thanks to organizations like LIVESTRONG, the American Cancer Society and other highly regarded organizations focused on the needs of cancer survivors. And let's not forget the core of exemplary physicians, researchers and other health professionals who are giving much of their time and are committed to making something happen in the halls of hospitals and clinics and the halls of Congress. These are remarkably dedicated women and men who devote their professional careers and research to ease the burden of cancer survivors, and those who support them.
But the rest of us also need to recognize that caring for the survivors of cancer is a responsibility whose time has come. No one should be a victim of success, especially someone who is journeying through their lives as a cancer survivor.
It's up to all of us to see that we do the right thing, and support these efforts with our research dollars and commitments in our communities, our hospitals and our cancer centers to see that cancer survivors are not lost somewhere in the midst of a huge bureaucratic shuffle.
With the outstanding efforts of organizations like LIVESTRONG emphasizing the importance of cancer survivorship, I have every expectation that this is a mission that not only demands success, but will achieve success for our patients and our communities.
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