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Checking the Life-Threatening Box: A Survivor’s Update

June 14, 2021
5 min read
Dr. Aune

A childhood cancer survivor himself, Gregory J. Aune, MD, PhD, shares his personal experience and thoughts during National Cancer Survivor Month.

(Originally posted on Medium on May 19th, Dr. Aune graciously agreed to share this with St. Baldrick’s.)

Dr. Aune was a St. Baldrick’s Scholar 2014 – 2019, serves as a scientific reviewer and is a member of the Advocacy Committee for the St. Baldrick’s Foundation. He is the Greehey Distinguished University Chair for Cancer Survivorship in Children at Greehey Children’s Cancer Research Institute in San Antonio, Texas.

Dear Family, Friends, and Colleagues,

The past two weeks have been stressful for my family, as we have been meeting with my doctors to address ongoing challenges with my cardiovascular health. I am posting today to provide some updated details regarding these discussions and to put my personal experience into context for survivors of cancer and their families everywhere.

First, I want to emphatically state that my situation is not unique.

Close to 100% of long-term childhood cancer survivors will develop serious health problems that are the direct consequence of their treatment exposures.

Any conversation about pediatric cancer, improving cures and outcomes, and survivorship must recognize this simple fact: by age 50, 60% of childhood cancer survivors will have passed away or be suffering from a life-threatening or debilitating late health complication. Those of you know that know me understand that long-ago I checked the life-threatening box.

For me, I am blessed to have access to the absolute best medical care in the world and moreover, a truly amazing wife that is my advocate, my doctor, and when asked, even my nurse. Unfortunately, not every survivor has that kind of situation and part of my rationale for posting today is to bring awareness to the needs of this population.

My Survivorship Journey So Far

In 2008 I underwent open-heart surgery to replace my aortic valve and bypass three blocked coronary arteries. Over the past several years I have felt really good and mostly stayed out of the hospital but have developed issues with another one of my heart valves (the mitral valve, which is the valve between the left atrium and left ventricle.)

While my symptoms have not gotten dramatically worse, my physical activity is somewhat limited. But from my perspective, my quality of life is excellent.

The Latest Update

However, my recent cardiology check-up raised concerns that the bypass grafts from my surgery in 2008 may have failed and it was also noted that the function of my mitral valve is getting progressively worse.

Last Thursday I underwent a cardiac catheterization and received mostly good news. Another open-heart surgery is not imminent, but realistically inevitable.

The good news is that all my bypass grafts were patent and so there is no need to address anything with that part of the picture. I did have a narrowing in the right coronary artery, but my cardiologists did not feel it was worth stenting — they debated for a time while I was on the table in the cath lab.

Unfortunately, my mitral valve is badly damaged, as are my lungs. I have pretty significant pulmonary hypertension and how much the failing mitral valve is contributing is difficult to interpret because I also have radiation and bleomycin-induced damage to my lungs that likely are major contributing factors as well.

In the meantime, my cardiologist is going to add a couple of new heart failure medications and hopefully we can make it a few more years before we have no choice but to replace the mitral valve. The hope is that by then there will be some new techniques for valve replacement that do not require an open chest procedure.

So what do I take away from this experience?

First, I am reminded that cancer is a lifetime chronic disease and the culture of oncology in the 21st century must adapt to this new reality. We cannot portray cancer treatment as a finite point in a patient’s life with the expectation that life returns to normal once curative treatment is completed.

Second, we desperately need to perfect curative cancer treatments to mitigate long-term toxicities and develop novel new treatments with less off-target effects on normal organs and tissues. This will require time, people, and money.

We no longer have the luxury of merely talking about the importance of these issues. We need to act and we need leaders that are willing to use available resources as intended and boldly pursue new initiatives aimed at addressing these fundamental issues that are hallmark of oncology successes in the modern era. In many respects, research in cancer survivorship and the care of cancer survivors is an unfunded mandate. This cannot continue.

Finally, we must think of all the survivors that do not have access to the type of medical care with which I am blessed. This system must change. Conservative estimates suggest that as many as 70% of long-term childhood cancer survivors are not followed with the type of comprehensive medical care that is necessary to maximize their quality of life.

Researcher sitting at computer

Moving forward, I will focus on these issues through my work in the lab, by caring for survivors and hoping to improve their cardiovascular health, and through outreach, community engagement and advocacy. As always, thanks to all of you for your prayers and support.

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