On Self-Advocacy and Paying It Forward

This week, I’ve had the privilege of contributing a Guest Blog column for Jessie Gruman’s important series on “What I Wish I’d Known Earlier About Cancer Survivorship.”

This is a topic that resonates with anyone who has received a cancer diagnosis, regardless of age, cancer type, or stage.  And as a five-time cancer survivor herself, Jessie thought it important to share the many lessons she learned over the years concerning the unique needs of those who have been diagnosed with and treated for cancer.

Jessie is President and Founder of the Center for Advancing Health (CFAH), a nonpartisan, Washington-based policy institute that is committed to increasing patients’ engagement in their own healthcare.  The CFAH actively engages with and listens to patients and translates what they learn into resources that help all of us participate fully in our own healthcare and that enable clinicians and policy makers to better understand and meaningfully support these patient-centered efforts.

The Center’s website and its blog, called the “Prepared Patient,” are valuable resources for patients, family members, clinicians, policy makers, and all those concerned about ensuring optimal, evidence-based healthcare. Appropriately, the  CFAH’s motto is “Evidence, Engagement, Equity.”  

These 3 “E’s” form much of the core of my advocacy efforts, so as soon as I began reading the resources on the Center’s site, I was hooked.  And then, when I read about the new series that Jessie was establishing for the Center’s blog–one that so openly and honestly shared the hard-won lessons many of us have learned as cancer survivors–I immediately found myself writing part of my story, where I took my initial steps toward self-advocacy and on the critical road toward paying it forward.

I’ve reposted my blog for the series here.  But I also encourage you to link directly to this posting on the Prepared Patient blog, so that you’ll have the opportunity to also read the many other blogs that have been written for this important series and to learn more about the Center’s resources.

“Advocacy: The Road We Decide to Walk on Today”

Debra Madden

This post was contributed in response to Jessie Gruman’s What I Wish I’d Known Earlier about Cancer Survivorship series about the unique needs and responsibilities of people who have been diagnosed and treated for cancer.

The year was 1986. It was a cold, frosty day in December, and it had just become clear to me that my father simply couldn’t take it anymore. I was living with my parents, having graduated from college earlier that spring, and every morning, my father woke up to the sound of my coughing—coughing that had gotten progressively worse. I’d had a terrible cold shortly before my graduation that I just couldn’t seem to shake, so I attributed my coughing to that. But the fact was that for more than a year, I’d also been fighting terrible exhaustion, drenching night sweats, and, strangely enough, unbearable itching. I’d gone to a number of doctors, looking for some explanation, but none of them could seem to find anything wrong. They each assured me that it was probably “just stress.”  After all, I was soon graduating and was probably worried about finding a job, right? And as a young woman who otherwise seemed very healthy, what else could possibly be wrong? In fact, during my last doctor’s visit, I was actually led to feel embarrassed: why would I think there was something wrong if the doctors themselves couldn’t find anything? So I gave up and resigned myself to thinking that I was simply worn out from my last year of college and that I’d gradually begin to feel better.

But I didn’t get better: I simply got used to feeling pretty terrible and essentially ignored or repressed it, depending on the day. My “newest” symptom was the relentless coughing. Every morning like clockwork, I began to have a coughing attack that seemed to last a little bit longer than the one the day before. Then at breakfast each morning, my parents expressed their worry, and I repeated the fact that I’d been to doctor after doctor who couldn’t find anything wrong. Then, on that morning in December, I stepped out of the shower, started coughing — and couldn’t stop. I wasn’t able to catch my breath, I was gasping for air, and I was truly frightened.

As I made my way shakily to my bedroom, after ensuring that I was okay, my father asked me whether any of my doctors had ever taken a chest x-ray. When I shook my head, he told me firmly to call work and tell them that I wouldn’t be coming in today. He was bringing me to a doctor now, and in a tone that broached no argument, stated, “And we’re not leaving there until they give you a chest x-ray, a complete exam, and an explanation of what on earth is wrong.”

And when the doctor placed that x-ray on the light box, it was clear that I was in terrible trouble. My coughing and all the rest of my symptoms were due to stage 3 Hodgkin’s lymphoma.

So at the age of 22, my world changed.  When looking at that chest x-ray, I became a cancer survivor — and by their insistence that I receive that x-ray, my parents had already become my advocates. Yes, I had initially tried to get answers concerning my symptoms. But I was young, unworldly, and self-conscious and simply didn’t have the confidence to question my doctors. Unfortunately, I was much more apt to question myself, and that lack of persistence as much as anything resulted in stage 3 cancer at my diagnosis.

Fortunately, however, today I no longer question myself. I question my doctors. And if I hadn’t learned that very difficult lesson, I wouldn’t be here today writing this essay for you—because my Hodgkin’s diagnosis was just the beginning.

My cancer treatment took place in 1987 – 1988 and consisted of a very aggressive protocol, including eight cycles of chemotherapy (alternating MOPP/ABVD) followed by six weeks of high-dose radiation. In the years since, I developed what is now termed as numerous “late effects” due to my previous radiation. When I was in my 30s, more than 15 years after my initial treatment, I once again found myself in a role where I was “too young” to be exhibiting certain symptoms, but this time I had absolutely no reluctance in questioning any doctor’s “conventional wisdom.”

It began on a typical day where I worked as a transcriptionist at a local neurology practice. I was moving a few patient charts before leaving to go home. Although I wasn’t doing anything physically taxing and wasn’t feeling particularly stressed, I suddenly became unaccountably aware of my heart—it seemed to be racing. I could feel it pounding and almost galloping in my chest. I sat down for a few moments until the sensation stopped. When I was on my treadmill a day or so later, I involuntarily raised my left arm. It was then that I felt a heavy sensation in my chest. I got off the treadmill, and the feeling went away immediately. But when I laid down in bed a bit later, I inexplicably felt short of breath though I was obviously at rest. The next morning, I immediately called my PCP and explained my troubling symptoms. I was told they had an opening in a few weeks. It’s important to note that at that time, there wasn’t a great deal of discussion or understanding of late effects due to cancer treatment — that was to come a few years later. But a little voice in my head insisted, “Tell them about your radiation and chemotherapy now.”

This time, I didn’t question myself for a second. I cleared my throat, took a deep breath, and explained that I’d had radiation to the chest and chemotherapy with Adriamycin about 15 years before. I knew that what I was experiencing was not normal, and I was terrified that my heart had been damaged by my treatment. By advocating for myself, I was taken seriously, and I hung up with an appointment later that same day.

Surprisingly, my EKG results were normal. But I carefully outlined my history for the APRN who was examining me. I explained that although I was only in my 30s, I had serious concerns that my symptoms could be due to cardiotoxicity secondary to my radiation or chemotherapy. She agreed that heart disease was indeed rare in women my age, but that my history very much had to be taken into account. She thanked me for being so candid and specific about my previous medical history and the cancer treatments I’d had. She then explained that she wanted to make a few phone calls to have me seen emergently by a cardiologist.

The test results from my new cardiologist confirmed my fears: coronary artery fibrosis (scarring), stenosis (narrowing), and 90% blockage secondary to radiation.

My case was reviewed by a team of cardiologists due to the location of the blockage and the distinct risk of another coronary artery collapsing during an angioplasty. After conferencing, their overall recommendation was to conduct an angioplasty with stent placement. But they also stressed the need to have a team of cardiac surgeons on hand to perform a coronary artery bypass graft (CABG) should a second artery indeed collapse, leading to risk of a heart attack during the procedure. And it was 100% my choice: deciding to go with angioplasty or going directly to a CABG. It was one of the most agonizing decisions of my life. But I ultimately decided to go with the angioplasty—and a second artery did in fact collapse during the procedure. But the team was able to immediately do a second angioplasty for that artery and place a second stent. And thanks to my two cardiologists, the procedure was successful.

Years later, my APRN—the one who had listened to my story so carefully as I stepped into my role as a self-advocate for the first time—shared something with me that I’ll never forget.  She asked whether I remembered that she’d spent a great deal of time on the phone to ensure I was seen by a cardiologist emergently. I assured her that I recalled all too well. She told me that when she finally got a cardiologist on the phone, he listened to everything she outlined about my case, and his response was, “Why are you calling me about this patient?  She’s far too young for her symptoms to be caused by coronary artery disease.”  She told me that she then went over my case again, stressing my history of high-dose radiation to the chest area, my chemotherapy with Adriamycin (whose most dangerous side effect is heart damage), and why it was therefore so critical for me to be seen right away. He listened as she advocated for me, minutes after I’d finally advocated for myself.

And now, he too is an advocate: I was the first patient he’d seen with cardiotoxicity as a late effect of cancer treatment. Just months later, he emergently treated a young man who had also had Hodgkin’s lymphoma and developed the same cardiac symptoms I’d exhibited; he has given grand rounds on treatment-induced cardiotoxicity; he now advocates on the critical need for specialists, PCPs, and patients themselves to be aware of the potential for late effects of cancer treatment for all cancer survivors, no matter their age.

The words that author Catherine Ryan Hyde expressed in Chasing Windmills can be likened to the choices we make concerning self-advocacy and advocacy on the behalf of others:

“I keep telling you the future isn’t set in stone. It’s not all decided yet. The future is just what’s down the road we decided to walk on today. You can change roads anytime. And that changes where you end up.”

More Blog Posts by Debra Madden

Debra Madden lives is Newtown, Connecticut, and is a 2-time cancer survivor: Hodgkin’s lymphoma as a young adult and breast cancer 20 years later as a late effect of her original radiation treatment. She is an active cancer research advocate who serves on several national grant review committees and panels, including for the FDA, the Department of Defense Breast Cancer Research Program (BCRP) and the Patient-Centered Outcomes Research Institute (PCORI). You can read more of Ms. Madden’s blogs at Musings of a Cancer Research Advocate and find her on Twitter at @AdvocateDebM. Ms. Madden’s photo is by Nancy Crevier at “The Newtown Bee.”