"It started out by doing a kind of a white paper that we called Imperatives for Quality Cancer Care. Ellen Stovall, our CEO [of the National Coalition for Cancer Survivorship] at the time, gave this report to Dr. Richard Klausner, who was the head of National Cancer Institute at the time. He called Ellen immediately and said, 'Why are we not doing something about this?' Within one year, we had the Office of Cancer Survivorship at NCI," ONS member Susan Leigh, BSN, RN, told ONS member Ruth Van Gerpen, MS, RN-BC, APRN-CNS, AOCNS®, PMGT-BC, member of the ONS 50th anniversary committee, during a conversation about her involvement in cancer survivorship advocacy. Van Gerpen also spoke with ONS members Deborah Mayer, PhD, RN, AOCN®, FAAN, and Timiya S. Nolan, PhD, APRN-CNP, ANP-BC, about the history and future of cancer survivorship.
Music Credit: "Fireflies and Stardust" by Kevin MacLeod
Licensed under Creative Commons by Attribution 3.0
Episode Notes
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Highlights From This Episode
Leigh: "Another way that [National Coalition of Cancer Survivorship] got very involved with looking at how we keep this information coming and how we really share care with our outside physicians is the development of survivorship care plans. And then we also hoped that we would see more survivorship clinics by now. But between trying to get people to develop care plans and clinics, it's been like pulling teeth. It has been very difficult. And a lot of this struggle to get this going has been, first of all, there isn't enough money to do this. There isn't enough time for immediate staff to take these on, and we just don't have enough staff as it is now. And survivorship is not a moneymaker, so it's just something that has to be done kind of on the side." TS 11:54
Mayer: "When I became ONS president in the '80s—I was the fourth ONS president—we were given a cancer grant to do something with our presidency. And that was when I really wanted to bring attention to rehabilitation as a means to address cancer survivorship issues because we had a very 'treat 'em and street 'em' attitude. We gave you your treatment, and we sent you home, and you had to figure out the rest. And there wasn't a lot of knowledge or support to help you put your life back together again afterwards. And so in that process, it was an interdisciplinary group of professionals that tried to come up with what was an appropriate position statement because ONS was just starting to do position statements. And so we developed a first position statement on cancer rehabilitation to address survivorship issues in like 1987 to '89." TS 17:15
Mayer: "When I went back to school for my PhD, I did my dissertation on health behaviors of cancer survivors and realizing the huge gap in the care that they were getting for anything other than their cancer. We were still focused on their tumor and on treating their tumor. But we were missing the picture that if the cancer didn't kill them, their heart disease would, and they would develop diabetes and other things. … But as people started living longer and longer, we were missing all these other chronic illnesses that would contribute to their quality of life and overall lifespan. So my dissertation put me on a different path, and I think the second part of my career was really focusing on instead of just relieving suffering and the quality of life issues, really looking at cancer care delivery and how we could do a better job of doing the team of teams that people needed to have their issues addressed." TS 19:34
Nolan: "I ended up having my first permanent role on a hematology-oncology unit at the University of Alabama at Birmingham. And there, I literally saw patients who were fighting for their lives. And despite the severity of their illness, they wanted more than just survival. They wanted to have meaning. They wanted to have dignity. They wanted to have impact with the time that they had left, whatever it was. And so those experiences planted a seed in me. And that seed was that cancer care must extend beyond treatment and we need to embrace, really, quality of life." TS 23:31
Leigh: "I was not the researcher. I was not the major writer. I was not the identifier of a lot of the risk factors. But I spread the seed. I took all that information from different sources and shared that with all of the audiences that I spoke to. So I was called a seed spreader, kind of the Johnny Appleseed of oncology nursing at that particular time. And then once we saw academia step in and say, 'We need to get good data about what's going on here,' … then my stories and stories from survivors started decreasing and the presentations were given more from the academic standpoint." TS 34:41
Nolan: "I really believe in community, academic, government, and industry approaches to survivorship as well. We can no longer operate in silos. We really need to learn how to walk across the aisle, build bridges as we can so that we can do this work together because we know that communities bring lived wisdom and context. And academicians bring the research and the ability to create the evidence. The government brings policy and public health infrastructure, and certainly industry brings innovation and scalability. But also in this new paradigm that we find ourselves in, the industry may also bring the dollars to be able to help us to do even more work." TS 43:45
