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My Personal Journey With The Cutaneous Lymphoma Foundation

Kory Floyd, PhD

Gilbert, AZ

Article previously published in the Cutaneous Lymphoma Foundation's Forum Winter 2012 newsletter.

When personal and professional interests intersect, it’s energizing -- even if disease is involved.

As a social scientist at Arizona State University, I study how emotional support and communication help people cope with heath challenges – a discipline that gained special resonance after I was diagnosed with cutaneous B-cell lymphoma in 2005 at age 36. My research specialty suddenly was vividly intimate.

The diagnosis came after my primary care physician and a dermatologist had been stumped by what caused a red bump on my left forearm. It didn’t itch or hurt, and I waited four or five months before asking my doctor to take a look. He suspected an infected hair follicle and tried several antibiotics, which had no effect. The next stop was a dermatologist, who took a biopsy. When a local lab couldn’t identify the sample conclusively, she sent it to a Mayo Clinic branch in Scottsdale, Arizona.

“I have some interesting news,” the doctor said after seeing the results. “It’s a cutaneous lymphoma, which is rare – and it’s the B-cell type, which is even rarer.” She hadn’t seen a case before, was unsure how to proceed and recommended that I see an oncologist.

Treatment decisions
The University of Arizona in Tucson, two hours from my home near Phoenix, has our state’s only comprehensive cancer center designated by the National Cancer Institute. I saw a specialist in this type of lymphoma, who concluded I have a low-grade, non-aggressive form of cancer.

I was practically hyperventilating when that news came by phone, but the stress eased when further tests led three other oncologists to agree I had a mild form of the disease.

Radiation therapy began quickly under the guidance of Dr. Michael Long, a local oncologist and hematologist, with brief daily sessions lasting six weeks. The lesion received low-dose exposure for about 10 seconds each time, a tactic aimed at reducing side effects -- though fatigue began after five weeks. I continued working and just had to avoid sun exposure on that arm – which meant wearing long sleeves outside despite summer temperatures above 100 degrees.

Radiation eliminated the first lesion and was resumed a year later when a new one appeared on my right arm and another showed up on my right leg. The brief daily treatments were a familiar six-week routine that seemed effective again.

Change of direction
When another set of raised lesions appeared on my right arm eight months later in 2007, Dr. Long suggested a “watch and wait” strategy rather than risking potential harm from repeated radiation that didn’t prevent recurrence. I returned to the University of Arizona and saw a different lymphoma specialist, who endorsed the same recommendation after consulting an oncology team at Stanford University in California.

I also had done research, applying academic discipline to a narrowly focused inquiry more compelling than most. Nothing in medical literature contradicted what initially seemed like an offbeat approach, and the only clinical trials were too limited to be statistically significant.

Also, as a scientist I know that just because something sounds odd doesn’t mean it’s unwise.

Our standby strategy has been in place for four years, with arm lesions coming and going. Sometimes they’re barely visible, and many days I don’t even think about the disease.

Dr. Long performs a checkup and blood test every six to eight months, and a PET scan every 18 months confirms the lymphoma hasn’t progressed.

Interests intersect
I appreciate my oncologist’s communication style and openness to dialogue about treatment, which includes soliciting other opinions. His frankness and confidence are reassuring, while also merging with my academic interest. This convergence opens the door for collaborations with the Cutaneous Lymphoma Foundation.

My work explores how communication and behavior have a positive or negative impact on quality of life after treatment for serious conditions. I’ve studied patients with other types of cancer, including recent research with colleagues on testicular cancer survivors. Clearly, this topic has a much more immediate poignancy now. I’ve become more deeply invested in the pursuit of knowledge.

I learned about the Foundation during 2011 while doing research and began exploring possible collaborations with Jennifer Viano, chief executive officer. In addition to designing data collection methods for quality of life research, I see opportunities to do other interesting things together.

As part of a committee, I hope to contribute meaningfully to patients’ and families’ knowledge about the interplay between emotional support and health. My findings appear in book chapters, journal articles and conference presentations, but I’m not often able to get them directly into the hands of patients and caregivers. It’s important to recognize that family members cope with our diseases, too. Their social support needs differ, and I also want to help them through the Cutaneous Lymphoma Foundation.

I want to contribute and learn, using whatever is in my arsenal as a professional and a patient to help others

Kory Floyd, PhD

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