20 Years Later Series Wrap-Up: Julia Rowland Shares a History of the Imperatives and the Current Challenges in Survivorship

I’m delighted to talk about the Imperatives for Quality Care, having been one of the co-editors of that important document. It was a series, actually, originally a white paper, as you probably already know that, with a variety of different professionals across the country contributing to pieces of that. A lot of us had input into it. A lot of us were clinicians and researchers working in the field as well as advocates to say, “What is happening, what isn’t happening, and where do we need to take the science?” That wonderful document, which Ellen [Stovall] very boldly took to the then-director of the National Cancer Institute, Richard Klausner, and said, “Rick, I think you need to read this.” And as the story goes, he took it on some flight, he was going overseas on travel, read through this, speed reader, brilliant mind, came back, didn’t even stop at “GO,” i.e. at his own institute. He went down to Congress and said, “I’m creating this office, this Office of Cancer Survivorship, because we need answers and we need you to be supporting the science that’s going to provide us with the information about what happens to people after cancer treatment.”

So, almost unilaterally, based on that document, he created the Office of Cancer Survivorship. There was a lovely Rose Garden ceremony in October of 1996, establishing the office. There’s a great picture of Bill Clinton signing the Ribbon of Hope, Ellen Stovall is there, Rick Klausner is there—a picture of which I have and I often want to trot out for new NCI directors to say, “See? See? We have this signed document, you know, make sure we’re putting moneys into the office!” And that was kind of the beginning of the attention paid within the [NCI] to survivorship issues, because it had not really been front and center for the Institute, and in some ways, people look back and say, “Twenty years later? The rest is history.” We took off. I often like to think that this office and this science is where the heart of the Institute is, because it’s all about the people who are touched by cancer and its treatment. The people, the families, the communities… we’re trying to figure out what that impact is and, you know, prevent adverse outcomes or mitigate them when they happen. So that’s really the driver behind the office. I’m very privileged… I’m not the original director, it was Anna Meadows, a fabulous world-class pediatric oncologist. In fact it’s been our pediatric survivors who have been the vanguard of the survivorship movement, because there we’ve had our greatest success stories. I came onboard as the first full-time Director in 1999, and I’ve been the Director ever since, which has been for me, a deeply humbling and privileged position to hold for these many years—to see this whole field really take off, starting with the Imperatives document.

Cancer survivorship now owns its own place on what we look at as the cancer control trajectory, that we often think of as starting with primary prevention, detection, treatment, and then we used to jump to end of life. And we’ve realized, no, the vast majority of people are going to have this very long period of living simply with a history of this—and may die of something actually unrelated to their cancer. Understanding what that long trajectory is, probably the longest in most survivors’ lives is going to be that period post-treatment—whether they have a recurrence and are retreated or not, that’s a very big block of time. So, it now exists as its own area of expertise and we have a lot more information about what are some of the kinds of problems that individuals face that patients used to come back and tell their clinicians about and be dismissed? “You know, doctor, I’m feeling tired and it’s three months since treatment ended, when is this going away?” “I can’t remember a thing.” “When’s my sex life going to revitalize?” “Will these pain syndromes resolve?” “Do I need to worry about another cancer, and if so what kind and what can I be doing about that?” “Am I at other risks for different kind of comorbid conditions—heart disease, bone health?” “What’s my life going to be like afterwards? What can I be doing about that?”

And I think we’re much more sophisticated now. I think we realize that those dialogues are important. Certainly, the Coalition [NCCS] with the redefinition of what it means to be a survivor from diagnosis to end of life has changed the dialogue. And we’ve seen that happen, so those conversations are happening now at the time of diagnosis, so people are making informed decisions. And we now are beginning to have the data to say how many might be infertile? And what are infertility interventions? Can we bring those forward? How many people may be at risk for fatigue and can we mitigate that? I think we’re seeing much more in the way of addressing those concerns and not dismissing them and saying, “Oh we don’t need to worry about that.” We do. That’s very much a part of care today.

Things we know less about are now, “What is the appropriate medical care?” I think we’re struggling to try and figure out how do we care for these millions of individuals who happen to have a history of cancer and who are back in the healthcare system? What kind of followup do they need? Do we need to be doing something special for them or different from them? Can we, in this new wave of therapies that are being developed, develop less toxic treatments? I think that is a continuing focus, and a challenge for us. Are we going to answer it with molecularly-targeted agents? I don’t know. I think we don’t have the answer for that. But I do know that any of those new treatments, unlike in the past, aren’t going to be just taken out into the community, they’re going to be looked at in regard to their long-term effects. That’s because we now think about survivorship from day one and going forward. That’s a very different world in which we live.

Another growing area to be concerned about is caregivers. We’ve suddenly realized, “Oh my gosh! That was in the definition of survivor!” Caregivers are included in that definition of who constitutes a survivor. And we’re only just recognizing, you know, we’re not meeting their needs. They’re an important part of care, and yet, we don’t really understand how to support them, how to best train, or educate them about what their role is, give them the skills that they might need to really help a loved one through a course of treatment and beyond. And take care of their own health if they may be at increased risk. Big new area that we need to be thinking about.

And perhaps a final one that we know very little about… Surprisingly lots of research we’ve seen with young survivors, because that’s been our vanguard group, we actually know very little about older people who live with a history of cancer. Those 65 and older, it’s a gap area, it’s shocking because that’s going to be the fastest growing survivor group in the country because of the baby boom generation—and the fact that cancer is a disease associated with aging. We have really no data on what we need to be doing for older adults and their caregivers and their networks and their providers. What are we going to tell them about caring for themselves? About the care they should be pursuing? About what kind of interventions may be needed for them in particular? And how do we do that?