When the Cancer Communicator Becomes the Cancer Patient
By Jeff White
I don’t like surprises.
In May 2023, I felt a lump on the right side of my neck, so I made an appointment with a primary care physician. I wasn’t concerned, but the doctor asked about weight loss, night sweats, and other possible issues. I had none of those symptoms. I asked him what he was concerned about, and he said he was trying to rule out malignant lymphoma. He hadn’t even examined me and went straight to possible malignancy. I felt like I had been given an electric shock and sank into my chair. He recommended I get it biopsied.
I had my first-ever needle biopsy and ultrasound, which was an intense experience as the word malignancy ran through my head. The techs were kind and sensed my anxiety. They quickly determined it to be a benign cyst. Good news! If I wanted it removed, I should see a surgeon. I went to a surgery consult thinking this was no big deal but within two minutes, the doctor said, “I don’t think that lump is what you think it is. I think it might be related to tonsil cancer.”
Cancer. I was blindsided and again felt like an electric charge went through my body. A tonsil biopsy was done a week later, showing HPV-positive oropharyngeal cancer (P16). Leading up to the surgery I had a series of scans: CT, MRI, and PET. Each session was stressful, as I had never had any scans before and they were zeroing in on the cancer. Each tech was different. Some were kind and sensitive, others were rushed and impersonal. I think it’s important for the teams to remember that a patient is likely getting a scan because something is wrong. There is nothing routine about making yourself vulnerable and having a machine detect cancer or another illness. Every patient is anxious even if they don’t show it.
One other surprise was when the MRI team handed me the disc to give to the surgeon. When the surgeon reviewed it with me, he immediately grew concerned and confused as the scan showed a brain tumor, not tonsil cancer. I was in deep shock, and it took several long and stressful minutes to determine he was reviewing someone else’s scan. I had to drive back to the imaging center 30 minutes away to get my actual scan and reschedule my pre-surgery consult.
After each scan, I hated looking at the imagery. It would fill me with such anxiety to know that the highlighted spots were cancer. My radiation oncologist once asked me, “Do you even want to see your scan?” and I immediately said “No!” I was so grateful that this was OK to do, and we talked through what he was finding without me having to look at it.
I had two surgeries about a month later. They removed my right tonsil and 24 lymph nodes. When I went back for my pathology results, I was oddly confident because I already knew I had cancer in my tonsil and they likely removed it. But at that meeting I learned the cancer had, in fact, spread to my lymph nodes. My treatment plan, which was initially going to be 33 radiation therapy sessions, now included six weeks of concurrent chemotherapy. Another unwelcome surprise.
Working in the cancer space, I know that patients aren’t usually exposed to information about radiation therapy unless they need it, and still others have an outdated understanding of what it is like today. As I was reviewing the clinic’s patient education materials before my radiation oncology consult, I decided that I would share my cancer experience and try to use it as an educational opportunity to help alleviate fears and misperceptions for other patients. As anxious as I was about the odyssey still ahead of me, the thought of being able to record this to help future patients gave me a strong sense of purpose and calm.
Eventually, I completed the 33 radiation treatments and six rounds of chemo. Throughout the process, I took photos and videos of my progress. I recorded how my skin was impacted by the radiation to go with what I captured before and after my surgery. At one point, I decided to stop taking pictures. One reason was personal: I didn’t want to remember it because it was rough to see. The second was for other patients: I recognized that everyone’s experience is different, and I didn’t want to set expectations for what their skin reaction might be.
While outwardly I am good and my surgical scar and skin issues are barely noticeable, there are internal scars that I am still processing. After my last scan at the two-year mark, I learned that for my type of cancer, a clean scan means the likelihood of recurrence is quite low. Finally, a welcome surprise.
Jeff is the director of public relations for the American Society for Radiation Oncology. He can be found on social media at https://www.linkedin.com/in/jeffawhite/ and @PRJeffWhite.
