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Jeff White - Tonsil Cancer Survivor

One single, swollen lymph node on my neck was the start of my unexpected cancer journey.

Ironically, I am immersed in cancer care and treatment every day as I work in communications for the ASTRO, the American Society for Radiation Oncology. Cancer has not been an issue in my family so the idea that I could get cancer never entered my mind.

My visit with a primary care doctor about my swollen lymph quickly escalated into a more serious discussion. The doctor immediately thought it was a sign of something more. A needle biopsy and ultrasound found that the mass was a benign cyst. Relief! If I wanted to get it removed, I should see a surgeon. A few weeks later I see a surgeon and casually ask for the mass to be removed. Within minutes he said, “I don’t think it’s just a benign cyst, I think you have tonsil cancer.” Cancer. Me? A biopsy of my tonsil weeks later confirmed his suspicion. He also wanted to check my lymph nodes, so a neck dissection surgery was needed.

I had options for my tonsil. Surgical removal and radiation or a slightly longer course of just radiation. I wanted the cancer cut out as quickly as possible and since I had to have surgery to remove some lymph nodes, I opted for the surgery/radiation combo. Post-surgery pathology confirmed the presence of cancer in my nodes, so six weeks of concurrent chemotherapy was added to my 33 rounds of radiation therapy. I won’t lie, adding chemotherapy and all its side effects to the mix was tough for me to swallow. I had about six weeks to recover from the surgeries before I started my RT and chemo, so I focused on gaining weight as I was told I would lose weight during treatment due to eating/swallowing challenges.

I’m not claustrophobic, but I won’t lie, the immobilization mask is tight. Getting radiation therapy only takes about six to eight minutes on the table each day, so keeping my eyes closed and some good music playing allowed me to withstand being immobilized. You tend to lose track of time and feel very isolated when the treatment team closes the door, so the music helped and I asked my amazing team to give me verbal prompts for each stage: imaging, starting treatment, halfway point, finishing up and coming into the room.

I also was put on three months of medical leave so I could focus on my treatment and recovery. I had no idea I would need to miss so much work, but the reality was this was my full time job and everything just took longer, especially eating and taking medications multiple times a day. Fatigue from both the radiation and the chemotherapy was real so I rested when I felt tired. The true side effects of the RT didn’t emerge until later in the process including losing my sense of taste in a flash one day during week two. I started using moisturizing lotion on my neck before I started treatment to stave off the impending skin irritation and encourage you to do the same. Other effects included saliva issues, severe dry mouth (especially at night) and painful mouth sores. All food tasted “grey” is all I could say. I was losing weight, but the threat of a feeding tube kept me focused on consuming high calorie foods. I ate a lot of mac and cheese and milkshakes with Boost Extra High Calorie added. I had separate side effects from the chemo, but I told both my radiation oncologist and medical oncologist about every side effect happening and they usually had a solution, so don’t be shy about telling them everything. The effects of radiation therapy are cumulative, so while you may look and feel ok by the end of your cycle, the side effects will continue for weeks afterword. While my skin was red and burned at the end, it got much worse in the weeks after I was done. Same with the mouth ulcers.

While there is an undeniable physical aspect to cancer treatment, also pay attention to the psychological aspects. It’s a lot. I am an optimistic, glass-half-full kind of person, but dealing with these medical issues and unexpected aspects was challenging. I had a variety of family and friends I relied on to talk through my issues and I hope you have people you can lean on. They will be glad to help and you will feel better not keeping everything inside.