I’m taking a short break from writing about local history while I complete treatment for recently-diagnosed head and neck cancer. For the next couple of months I will be writing instead about my experiences with cancer, hoping that some of you will find the information helpful. Please feel free to forward my posts to others you may know who are dealing with cancer, especially of the head and neck. If you are missing my history stories, please be patient, as I expect to return to them by April or May this year.

Head and Neck Cancer: A Personal Journey

Working My Way Toward Belief

I kept thinking it must be a mistake.

Two days before Thanksgiving, while watching television in the evening, I noticed a tender spot under my right jaw, and felt a small lump there, about the size of a pea. I didn’t think much of it at the time, and figured it would go away. By the next day, in the car on the way to spend the holiday with family, the lump was grape-size and more tender, and by Thanksgiving Day it was the size of a plum and the muscles in my neck were sore. No fever, no other complaints, and of course no help available over the holiday weekend.

I assumed it was a dental issue. I had a pocket between two rear teeth in my lower jaw that gave me problems from time to time. I thought perhaps some food particle was trapped and infected, or perhaps one of those teeth had an abscess, although a dental exam only a month ago did not show any problem. At my age, dental problems were always a possibility, and a recent cleaning could have set off something underlying as well.

Monday after the holiday my dentist saw me right away. X-rays revealed no abscess, but findings were consistent with a periodontal infection, as I had guessed. The swelling was going down on antibiotics, but I thought I would err on the side of caution and see my internist, just to be sure we weren’t missing something.

She saw me on Thursday, and when she felt my neck she didn’t like what she found. She got my ENT doctor on the phone while I waited in the exam room, and after conferring they sent me for a CT scan. I was in luck again, and was able to get the scan the same day.

That very afternoon I got a call from my ENT doctor saying the CT scan showed enlarged lymph nodes on both sides of my neck. The tumor was invading my neck muscles.

It had to be a mistake, I thought. I had been feeling fine less than a week ago, better than I had for a long while in fact. How could something like this be going on? It was just an infected gland, from my teeth. It had to be.

It wasn’t. The next day my ENT doctor examined me in his office, passing a thin, flexible tube through my nose and down my throat, where he saw a small tip-of-the-little-finger-sized lesion at the base my tongue, an area that had been suspicious on the CT scan. He then used a needle to drain the obvious lump in my neck (a needle biopsy). “That’s interesting,” my doctor said. “This looks like pus.”

He showed me the tube, full of murky mottled fluid. “Yay!” I thought. “Pus!” Most people would not express delight at having pus drained out of their neck, but I welcomed it as a good sign. Maybe this was going to turn out to be an infected node after all, I hoped.

The samples were sent for culture and pathology to make the diagnosis. The biopsy was not back until Wednesday of the following week. The culture showed an infection, but the pathology was positive for cancer cells. I had both infected lymph nodes and cancer.

With positive radiographic and biopsy evidence of cancer, my surgeon had already taken my case before the hospital’s tumor board. The prognosis for treatment and cure was good, but I would need to get a PET scan and be examined under anesthesia with a direct biopsy of the tongue lesion. This would provide sufficient information to create a treatment plan, which was for seven weeks of radiation and chemotherapy.

It appeared we had caught my cancer early. It’s likely that a lymph node became infected either after a recent dental cleaning or some other process, and the cancer was already present in the node. It would have continued to spread undetected and be well along by the time it was noticed had I not gotten the infection and looked into the neck swelling. God works in mysterious ways, does He not?

I had been fortunate in many ways: my cancer had a good potential for cure, I had top doctors at a world-class university medical center, where I had worked in the medical field as a practice administrator for many years before retirement. And, my son was a gastroenterologist, my daughter-in-law a medical oncologist.

The next Monday I was back at the hospital for a PET scan. Surely, this time the mistake will be discovered, I thought. There is nothing wrong with me. My neck is back to normal, I have no symptoms at all, and I feel great. “Don’t kid yourself, Mom,” my son said. “There are excellent success rates with this kind of cancer, but you do have cancer.”

What wonderful tools are available now! The purpose for the PET scan was to determine the exact extent and location of each and every area that needed treatment. A PET scan is a two-step process. Glucose is absorbed by cancerous cells and makes them apparent on the scan. After injecting me with glucose, the cancer tissue identified on the scan is matched to findings on the CT scan. The scan covered my body from below my eyes to my upper leg. The result confirmed and defined the cancerous lymph nodes in my neck, as well as the primary lesion at the base of my tongue. Fortunately, there was no additional cancer anywhere in my body.

I could no longer deny my cancer diagnosis.

The next item on the agenda was to discuss and plan my treatment. The following week, with my husband, my son, and my daughter-in-law at my side, I met my team of radiation and medical oncologists and support staff. They recommended a trial. The benefits of the trial over standard treatment were to reduce the radiation dose and side effects.

There are many vital structures in the head and neck, and tailoring the radiation to avoid injury to vital structures while destroying the cancer is not an easy task. Lowering the exposure to known areas of disease, as opposed to standard radiation over a larger area not shown to have disease, reduces the side effects, confining the dose to as small an area as possible. The recommendation was that this lesser radiation was safe for me.

In addition, rather than the standard Cisplatin chemotherapy, I would be receiving Cetuximab, a monoclonal antibody. Because my cancer had spread, radiation alone would not stop the cancer. Cetuximab is effective for the particular cancer I have (squamous cell head and neck cancer), and although it has its own side effects, they are less than what I would expect from standard chemotherapy options.

After long discussion, the decision was made to follow the recommended trial, and I signed the papers.

I would not have had the confidence to do this on my own. I still didn’t feel sick and not completely convinced I had cancer. The lump was for all intents and purposes gone after the antibiotics were finished. If I had to believe I had cancer, I was skeptical about taking any short cuts. Were it not for my family’s expertise and confidence in the recommended therapy, I may have opted for a more difficult course. Ultimately I came to believe that the recommended treatment had every likelihood of doing the job just as well, and in the event of any remaining cancer it could still be taken care of. There seemed to be no reason to opt for a more difficult therapy.

I would begin treatment with the new year, on January 2.