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 new Patient-Centered Outcomes Research Institute (PCORI)’s 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 through the NBCC’s “Breast Cancer Deadline 2020” and to make crucial inroads into the prevention of all primary and metastatic cancers
Thank you for visiting: I hope that you return often!