Squamous cell carcinoma survivor grateful for proton therapy
After a spearfishing trip, I noticed an unusual earache. When spearfishing, it is typical to dive down 50 to 60 feet in the water to fish, so I thought it was simply some water in my ear. Then my lymph node in my neck became swollen.
In October 2022, I went to see my primary care doctor. She prescribed an antibiotic and eardrops. She told me not to worry and to follow up if things did not improve. I procrastinated and did not go back until January 2023 when I was due for my annual physical exam. When I mentioned my lymph node was still swollen, she scheduled a test and then referred me to an ENT to have a biopsy. Things were moving quickly, and that gave me a lot of anxiety. I knew something was wrong.
At a local hospital in Florida, I had robotic surgery on the back of my throat to remove the cancer, along with 32 lymph nodes. After surgery, a biopsy showed microscopic spreading, even though they had clear margins when removing the tumor. Two of the 32 lymph nodes in my neck tested positive for cancer. The doctors suggested I start chemotherapy and traditional radiation therapy. But I wanted a second opinion.
I have always had trouble swallowing, so I was scared that side effects from radiation treatment would make it worse. My brother, Dion, lives in Houston and connected me with a friend who had the same type of cancer. Everyone told me to get multiple opinions from various hospitals.
So, a week later, I visited another cancer hospital. They said the cancer was confined and suggested proton therapy since I only needed radiation to one side of my neck. The benefit of proton therapy is that the radiation could be delivered to only one side of my neck. This would minimize side effects to the other side of my neck, as well as my eyes, mouth and brain.
Once I found out that proton therapy was the right treatment for me, I was relieved. I wanted to find the best proton treatment facility I could.
The day I was supposed to leave for Houston, I got busy at work and almost canceled the trip. At the last minute, I decided to go.
At MD Anderson, I had appointments with my full care team to review my case and set up my treatment plan. I met with medical oncologist Dr. Neal Akhave, radiation oncologist Dr. Steven Frank, along with physical therapy, speech therapy, hearing and dental oncology.
At my first appointment with Dr. Frank, I remember asking him why I should come to MD Anderson for proton therapy. He mentioned that proton therapy is like a scalpel. Everyone has one, but it is who is using the scalpel that matters.
“We give patients the full benefit of resources of the nation’s top-ranked cancer center, such as knowledge, expertise, world-renowned research, clinical trials and technology,” says Frank.
Making that trip to MD Anderson to meet Dr. Frank and the rest of my care team changed the course of my treatment.
Dr. Frank took the time to explain the process. That put me at ease. When he learned that my brother Dion and I attended the Naval Academy, at my next appointment, he surprised us by walking in wearing his former Naval Submarine Officer uniform. That level of compassion and camaraderie was like nothing I had experienced with any other doctor.
Managing side effects from treatment
My wife, Karen, stayed in Florida while I traveled to Houston to begin treatment. I lived with Dion and worked remotely every day. I rented a car to drive myself to daily treatments for six weeks of chemotherapy and proton therapy.
Toward the end of chemotherapy, I experienced nausea, so I took medication to help. The lymph node dissection during surgery caused lymphedema in my neck and limited the range of motion in my arm. I still cannot raise my arm as normal but have started physical therapy. The surgery also severed nerves in my neck, making it hard to open the corner of my mouth, which is expected to be permanent.
The side effects from proton radiation were not as bad as I anticipated. I had a slight sunburn at the site of radiation, but it improved after two weeks. I ate my normal diet, but I did lose my sense of taste temporarily. I gained a few pounds during treatment, which I was not expecting.
Getting a second opinion led me to the right treatment for me
My last treatment was on June 7, 2023. As a token of appreciation, I ordered personalized Navy hats for Dion and Dr. Frank, along with a custom submarine photo and a Zippo lighter. These are typical Navy gifts, and I wanted to show my appreciation to them both.
Had I known about proton therapy from the beginning, I would not have had surgery.
If you have any doubts about your diagnosis or treatment plan, get a second opinion. I spent five weeks getting several opinions for my treatment options. Even though I did not learn about proton therapy until week four, it was the perfect solution.