As I do with my profession, I wear many hats as a patient advocate. My role as an advocate began when I became a Peer Mentor for newly diagnosed cancer patients with Ann’s Place: the Home of I CAN in Danbury, CT. With my background as a science writer, I’m also passionate about the need for patient information that makes complex medical information clear, understandable, and accessible for patients and their loved ones. Due to my concern about the need for improved health literacy and accuracy in reporting about complex medical issues, I decided it was high time to add my voice to the ever-growing blogosphere.
I should also tell you that I’m a 2-time cancer survivor, and for better or for worse, that fact does impact my outlook and my perspective. I was first diagnosed at the age of 22 as a young adult in January of 1987. I’d been struggling with unexplained symptoms for several years–symptoms that I later learned were “classic” for Hodgkin’s disease. (More on that in a future blog…) I finally received my explanation less than a year after I graduated from college, when I was told that I had stage 3 Hodgkin’s lymphoma. Thus began my entry into young adulthood and a world comprised of painful biopsies, CT scans, chemotherapy, radiation, and more time spent with my oncology nurses than with my friends and new work colleagues.
As many young adult cancer survivors will tell you, receiving such a diagnosis at that time of your life brings with it multiple unique, very difficult challenges. And for some of us, it divides time and shapes who we are henceforward. For me, it has and continues to affect every important adult decision of my life, including career choices, career changes, when to get married, the question of having children, whether and when to move, and on and on and on.
And again, as with far too many young adult cancer survivors, in the years following my treatment for Hodgkin’s, I’ve gone on to develop several serious late effects secondary to that treatment, including serious cardiac issues in my 30s and a second cancer diagnosis at the age of 42: this time, stage 2 breast cancer.
It was following my second cancer diagnosis that I became an active cancer research advocate. I’ll speak about this further in a future blog post. But it was one afternoon soon after my breast cancer surgery and a day or so after I’d once again begun chemotherapy–it was once again a day that divided time for me–that I began my transition from that of a patient to that of a patient advocate. As noted above, I began by receiving training for and volunteering with Ann’s Place as a peer mentor, primarily for new patients who had just been diagnosed with breast cancer–most of whom were younger patients, in their late 20s or early 30s, since I too was (even at the age of 42) still considered a young adult cancer survivor.
My feeling is that it’s also “all about the science,” and I’m passionate about the need for enhanced, innovative research that answers those questions of most import to cancer patients themselves. I immersed myself into the science of breast cancer and cancer overall to gain a seat at the table as an educated research advocate, feeling that it is critical for patient advocates to have a strong voice wherever research decisions are made. I’m a proud graduate of the National Breast Cancer Coalition (NBCC)’s Project LEAD(r) and Project LEAD Clinical Trials(r), premier, intensive science training programs. These workshops, which focus on breast cancer biology, genetics, epidemiology, and research design, prepare graduates to bring an educated consumer perspective and critical thinking skills to the important issues and controversies in breast cancer. I now serve on several regional and national committees as a cancer research advocate and Patient Representative, including the ECOG/ACRIN Cancer Research Group‘s Cancer Research Advocate Panel and was a member of the Patient-Centered Outcomes Research Institute (PCORI)’s inaugural Advisory Panel on the Assessment of Prevention, Diagnosis, and Treatment Options. I also regularly participate on peer and integration panel grant reviews, including for the Congressionally Directed Medical Research Programs’ Breast Cancer Research Program.
In this blog, I’ll let my musings take me where they may, but I hope that my perspective will shed more light on:
* the importance of having educated cancer research advocates working in partnership with scientists and clinicians at every level where research decisions are made–including from the very beginning, when determining those research questions that are meaningful and critical for patients
* evidence-based practice for cancer survivors (and all patients) concerning screening practices, treatment, and monitoring for late effects, recurrence, and metastasis
* research on new agents and modification of current therapeutic exposures to effect/preserve positive outcomes and minimize the incidence of late and secondary effects of cancer treatment
* innovative, impactful research to prevent breast cancer metastasis and the development of primary breast cancer and to make crucial inroads into the prevention of all primary and metastatic cancers
Thank you for visiting: I hope that you return often!
I would like more information on cardio problems due to radiation. I had radiation for Hodgkins 31 years ago. Now I have a rapid heart rate. I have asked the cardiologist if this could be due to radiation. His response is no.
It’s known that patients treated for Hodgkin’s lymphoma with radiation (and anthracycline-based chemotherapy) do have an increased risk of cardiac disease as a late effect (typically becoming symptomatic 10 or more years following their cancer treatment). Physicians–particularly cardiologists and primary care physicians–MUST be aware of this if they are to properly monitor and care for their patients who are cancer survivors. Concerning a rapid heart rate, I always wondered about that, because even well before I was diagnosed with coronary artery stenosis secondary to my radiation, I had a very fast heart rate–with a “normal” resting rate of 100 to 110 beats per minute, no matter how “physically fit” I was at the time. I’ve found numerous anecdotal reports from other Hodgkin’s lymphoma survivors that they also have an unusually rapid heart rate, and more recently, I have seen some studies in the medical literature reporting an abnormally high heart rate (i.e., tachycardia) in an increased percentage of Hodgkin’s lymphoma survivors compared to the general population. Most importantly, the risk of developing late cardiac effects for those of us who were treated for Hodgkin’s, particularly in the 1980s and before, is very real, and it’s critical that you are cared for by a cardiologist who recognizes this–and, ideally, has cared for other Hodgkin’s lymphoma survivors who developed cardiac issues. In fact, there is now an entire medical specialty dedicated to minimizing cardiotoxicity during cancer treatment and cardiovascular risks during cancer survivorship, called cardio-oncology. Terrie, where are you from? There are several cardio-oncology departments across the country, e.g., Vanderbilt’s Cardio-oncology Program (in Tennessee), Brigham and Women’s Hospital and Dana-Farber Cancer Institute’s joint Cardio-oncology program (Boston, Mass), Ceders-Sinai (Los Angeles, California), and the University of Michigan. Please consider getting a second opinion from a cardiologist from such a program if possible or one who has experience monitoring and caring for cancer survivors. If you’re unable to locate such a cardiologist, I’d be more than happy to reach out to a colleague of mine: she is a cardiologist with whom I serve on a Cardiotoxicity Working Group through one of the National Cancer Institute’s Cooperative Groups, and it’s very possible that she may be able to provide a referral to one of her cardiologist colleagues who is in your area of the country. I’ve also included a few links below, hoping they may be helpful.
My very best to you,
Debra, your blog is awesome and filled with useful information. Congratulations.
Deborah, thank you so much for your kind words about my blog. It was a joy interviewing you for this article, and I pray that this post will help to bring some comfort and hope to caregivers who far too often don’t receive the critical support and resources they also need during their loved ones’ cancer journeys.