National Cancer Survivors Day: Stories from ACCC Staff

The first Sunday in June is always dedicated to National Cancer Survivors Day, and this year it falls on June 4. It’s a day that recognizes the perseverance and bravery of the 18.1 million survivors of cancer in the US. This year, ACCCBuzz is recognizing two survivors who are members of the Association of Community Cancer Centers’ (ACCC’s) staff. Stephanie Helbling, MPH, MCHES, is a senior medical writer/editor, Editorial Content & Strategy, and Lyndsey Griffin, MSW, LCSW-C, OSW-C, is a senior oncology research program manager at ACCC in Rockville, Maryland. ACCCBuzz spoke with Helbling and Griffin to learn more about their respective cancer journey and how their experiences with their disease has influenced their work at ACCC.

Griffin: I was diagnosed with papillary thyroid cancer in May 2014. My doctor called me when I was at work, and once he said the word cancer everything that came after was like white noise. That experience gave me an appreciation of just how hard it is for patients to absorb information. I’d been married to my husband for 7 months at the time, and I was living in this fantasy world. We just got married, we were going to start a family. I felt like everything was put on hold.

Helbling: I was diagnosed in 2007 with diffuse large B-cell lymphoma, and I was scared. In 2006, I went to a podiatrist for heel pain, who—after taking an x-ray—said it was a cancerous tumor and [that] I should have it checked out further with an MRI. After the MRI, they told me it was not cancer, but that I needed to see a surgical oncologist at Yale New Haven Hospital in Connecticut. When I got there, they did a CT biopsy and imaging scans and, again, said it was not cancer. I was put on crutches and a walking boot and [was] told it was probably just a fracture. In January 2007, I told them to take the tumor out because I was still in pain and not satisfied with the answers I was getting.

ACCCBuzz: How long was your cancer journey?

Griffin: I feel like it is still going on. On paper, I have been released from treatment, but I take hormones every day and see an endocrinologist at least once a year. I have lab tests a few times a year, and if they show anything abnormal, then I need to go in more often. I felt my journey was relatively short because I started having symptoms at the start of 2014, I was diagnosed in May, [and] then I had surgery in July. But after surgery, I dealt with the side effects of being on hormones and my calcium plummeted, which caused neuropathy. In addition, I had zero energy because I had intense hypothyroidism because they were trying to titrate the dosage of the levothyroxine. Looking back, I was in active treatment for about a year. 

Helbling: Mine felt short. I was diagnosed with Stage I diffuse large B-cell lymphoma; they gave me a 92 percent chance of survival. I had four rounds of R-CHOP [cyclophosphamide, doxorubicin, prednisone, rituximab and vincristine] that began on Valentine’s Day in 2007 and concluded in May. I received radiation treatment in my heel for two weeks straight. After additional testing, I was considered cured. With my first surgery, they had to remove a large amount of bone material in my heel, which they replaced with cadaver bone material. However, it did not take, so in 2013 I had to find another surgical oncologist who could perform the surgery. This time, they used bone material from my hip. So far, so good. 

ACCCBuzz: How has your cancer journey informed the work you do at ACCC?

Griffin: I feel like my experience has impacted the work I do at ACCC very much because of our work in education and advocacy. I am [health care] provider facing. So I’m talking to the sites and medical teams, and I hope the information we give to these providers will influence their day-to-day care of patients. We need to keep patients at the forefront of these conversations we are having. There is a saying, “Don’t talk about me without me.” So patients need to be involved in the decisions that are being made on their behalf. My work with the ACCC Community Oncology Research Institute does that by diversifying clinical trials and improving equity and access to cancer care.

Helbling: Here at ACCC, we write for health care providers. But I also try to focus my writing so [that] it is also patient friendly. I think it is very important for patients to be well informed about their disease and their options.