Hodgkin’s Lymphoma Survivor Dr. Greg Aune Discusses Issues in Long-Term Survivorship Care
At age 16, Greg Aune was diagnosed with Hodgkin’s Lymphoma and was successfully cured of his disease after undergoing one year of chemotherapy and radiation treatments. His cancer experience led Dr. Aune down a path to becoming a pediatric oncologist and physician scientist.
In this video, Dr. Aune discusses issues of long-term survivorship care and care planning as part of the NCCS Cancer Policy Matters “20 Years Later” special blog series marking the 20th anniversary of the “Imperatives for Quality Cancer Care.” The sixth principle of the Imperatives states, “People with histories of cancer have the right to continued medical follow-up with basic standards of care that include the specific needs of long-term survivors.”
Transcript:
I had Hodgkin’s Disease when I was 16 years old. I think this is probably one of my, I guess the biggest life event, one of the biggest life events I’ve had.
My personal experience was I was told that, to just get through the treatments, once you get through the next year or so of radiation and surgeries and chemotherapy that your life’s gonna go back to normal. And I think what I found out, or experienced, the rest of my life since then, which is almost 25 years later now, is that… Cancer is not, pediatric cancer, or cancer itself, is not an acute disease. It’s a lifelong problem. And I think for most patients this is probably the case.
The treatments that I got consisted of, I got fairly non-focused radiation to my chest and my abdomen and that was about nine weeks total. After that, I got eight different chemotherapy drugs over the course of about nine months. It was a terrible experience… is what I would say. I lost about 65 to 70 pounds of weight. There was a three month period where I didn’t eat at all. I had to get all my nutrition through IV, basically, because my intestines had stopped working optimally and I just couldn’t tolerate any food. So, fortunately I made it through all that and survived. And I think what I learned after that was it was definitely not over. I think as a teenager, it’s a time in your life where you’re trying to grow into adulthood and it kind of turns your life upside-down. You’re trying to do that and deal with mentally understanding what happened to you. So I went through a lot. During my college years I think I thought a lot about what happened to me and I think what angered me the most was actually the toxicity of the medications. I just didn’t understand why the medicines that I had to take were so bad. I mean, I did, because I lived, but on the other hand it just seemed like there could be a better way to treat cancer. As those thoughts developed, I got really interested in research and medicine and ultimately went on to become an MD, PhD student. And I started as an MD, PhD student really wanting to develop new chemotherapy drugs, with the idea that they would be less toxic and better for patients.
What I’ve had during the period since I’ve been treated, I had a mild stroke a few years ago and was admitted to the hospital. It was a very scary experience–I couldn’t move half my body for about 15 minutes. One of the biggest problems I had is actually heart problems. About 18 years after I was treated, I somewhat urgently had to have open heart surgery. I had a heart valve that was badly damaged that was discovered, and during the work-up for surgery–they told me it had to be replaced and for the work-up for that surgery, they found three of my coronary arteries were 95% blocked, so I went for surgery about a week later.
I think that was a major life-changing event for me. I’ve developed Pre-Diabetes, something that’s been watched, it’s something that we know from survivorship studies that can happen. And then I have infertility, which is something that I knew about and thankfully–this goes back to, a lot of the late effects that we see, if you are engaged in medical care and can advocate for your own care, the outcomes can actually be phenomenal. So I survived heart surgery because I was able to get care at a really good institution in Texas. I was able to have children because I donated semen before I was treated with chemotherapy and the technology improved and my wife and I have four children by in vitro fertilization–because the technology has improved over the years.
So I think for many of the late effects that we deal with–even if patients get them, there’s an opportunity to intervene and have a healthy life, provided that they’re caught early and in time. I think my experience as a patient, on some level is a little unique, from being able to get care. That’s because I was an MD, PhD student and I kind of was able to navigate the system and find the right doctors to take care of me. I never had an oncologist or a survivorship doctor advocate for me. In fact, a lot of what I did, I actually read the literature myself and I’d go into my (oncologist’s office)–it was an adult oncologist who took care of me–and I’d say, “I need an echo this year, I think I need a colonoscopy now because I had radiation in my abdomen, I need this, this, and this test.” And we’d do it. And that’s kind of how my survivorship care been provided.
I think for our patients–the vast majority of them are not in the medical field. So it’s really important for us to educate them. I think survivorship care plans, where we basically summarize their treatment history, summarize the late effects they need to worry about, and also give them really definitive guidelines for followup care for each of these problems they might have–that’s extremely important. Not only because it educates them, but the idea is that they could go to a primary care doctor, like a family practice doctor or internal medicine doctor who would then be able to read the survivorship care plan and carry out the screening that needs to happen. The whole goal of which is to catch things like heart problems and high blood pressure and those things early so that we can intervene and hopefully give them a–you know, let them have a healthier life for a longer period of time. So I think, in terms of survivorship care plans, a lot of the groups of physicians that are involved in oncology have recognized this importance, and there’s literature coming out about how they’re important–the studies have been done from a patient satisfaction standpoint, it’s really important to them. But I think we’re struggling at coming up with a uniform way to actually deliver these to the patients, and I think it’s a really important thing that we have to change about survivorship care, is that we have to have people working in survivorship that are dedicated to that specific area of oncology, and then survivorship care planning is a big part of what they would do as their job.
I think my story kind of makes people take pause. And then kind of understanding the issues, having seen it as a physician and being involved in research gives me a different perspective able to hopefully convince someone that we’ve got to do something about this.
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