Making the most of cancer: My journey from diagnosis to advocate

An unexpected diagnosis

When I was diagnosed in 1996, it was a complete surprise. I first noticed a hard lump under my left nipple but wasn’t too concerned – until I experienced bleeding. That sent me to a surgeon, who performed a biopsy and confirmed I had breast cancer. The pathology report from the modified radical mastectomy that followed found a 1.8-centimeter tumor with micrometastasis in one lymph node. At the time, I was staged as IIA, but under today’s guidelines, I’d be classified as stage IB.

Men with breast cancer routinely undergo genetic testing, but back then, that wasn’t common – especially in community hospital settings. I wasn’t tested, though I later assumed that I had a BRCA2 mutation because of my Ashkenazi Jewish ancestry, my mother’s history of pancreatic cancer, and my relatively young age at diagnosis – all associated with a BRCA2 mutation.

The genetic twist

Fast forward 20 years: I was diagnosed with prostate cancer. This time, I underwent genetic testing, expecting to confirm a BRCA2 mutation. Instead, I learned I had a CHEK2 mutation, a DNA repair gene associated with an increased (but moderate) risk for cancer.

Knowing that I have this mutation doesn’t significantly change my risk for additional cancers or my surveillance, but with limited studies and data, it is difficult to confirm. To further complicate matters, there are different variants of the CHEK2 mutation, and what’s true for one variant may not apply to other variants.

Although the uncertainties regarding mutations like CHEK2 are frustrating, knowing that I have it is important because it may affect treatment decisions in the future. Even if the information is incomplete, it contributes to an understanding of my biology and my cancer.

Two cancers, two different worlds

Having had both breast cancer and prostate cancer, I can’t help but compare the two of them. They are biologically similar in many ways; however, prostate cancer seems many years behind breast cancer in terms of research and targeted treatments.

It’s rare to see breast cancer and prostate cancer discussed in the same room or even at the same conference. What could we learn if researchers and advocates broke out of these disease-specific silos? The cross-pollination of ideas could lead to better treatments for everyone.

Becoming an advocate

My advocacy began the moment I was diagnosed. At first, my focus was male breast cancer. I made it a point to show up at breast cancer conferences, races, and walks to remind everyone that men get breast cancer, too. I wanted to be – quite literally – a face at the table.

Within a couple of years, I realized that while men’s experiences with breast cancer have unique challenges, the disease is largely the same in all genders. I started advocating for everyone affected by breast cancer. To this day, I bristle a bit when someone assumes that every question I ask at a conference will be in reference to men with breast cancer. That’s not the case. I’m knowledgeable and advocate for everyone affected by breast cancer.

Most of my advocacy has been local. Through the Cancer Resource Center of the Finger Lakes, I met with individuals who were newly diagnosed, helping them navigate the cancer world. As part of that work, I wrote a regular column for the local newspaper and those columns were compiled into a book, When Your Life is Touched by Cancer: Practical Advice for Patients, Professionals, and Those Who Care.

Although now retired from the Cancer Resource Center, I continue to facilitate a weekly breakfast club for men with all types of cancer. Now in its 15th year, . the group provides an opportunity to talk openly about what’s going on with their health. As one participant told me, “It’s the only group where I can describe everything that’s going on and not worry that I’m freaking people out. I don’t need to censor myself.”

Bringing science

In recent years, my attention has focused on the science of cancer, and in connecting scientists with the patient community. Although cancer is awful on a personal level, it’s intellectually fascinating and maddingly complex. I regularly serve on research review panels with scientists and other patient advocates. These panels help decide which proposals should be prioritized for funding.

When I began serving on these panels, I knew that the patient advocates were intimidated by the scientists. I was surprised to learn, however, that the scientists were just as afraid of the advocates. This realization prompted me to work with professors at nearby Cornell University to create a program designed to get the young researchers out of their labs to meet people personally affected by cancer. We wanted the students to understand cancer not just as cells in a lab, but as a disease that affects human lives.

What gives me the greatest pleasure is hearing from former students who have graduated from Cornell and want to establish similar programs at their new institutions. They know that their research is better when it incorporates the patient’s voice.

A life shaped by cancer

At this stage in my cancer advocacy, I feel like a professor emeritus. I enjoy thinking about the big picture of the cancer world, but I’m eager to share my wisdom with whoever wants it. I continue to talk with newly diagnosed patients and serve on research review committees.

Like so many others, I’m still at risk for a cancer recurrence or an entirely new cancer. Cancer has been a part of my life for nearly three decades. I’ve tried to make the most of it.