Overview
In November of 2023, one month before my 70th birthday, I was diagnosed with stage 3 metastatic squamous cell carcinoma. The following month I started radiation and chemotherapy cancer treatment. I'm happy to report that my treatments were very successful, and that all of my post-treatment follow-up appointments have shown no evidence of disease.
Thanks to innovations like targeted radiation therapy, today cancer is not necessarily a death sentence, and many people go on leading relatively normal lives after treatment.
Being told you have cancer is a shock to your system. Having to endure cancer treatment is the most challenging thing I've ever done. I hope that by sharing my cancer story I will provide valuable information to people who are searching for answers to perplexing medical conditions, and to people who have already been diagnosed with cancer and are facing treatment.
My long, arduous, and frustrating journey to discovery
In early 2021 I started having difficulty swallowing (medically referred to as dysphagia). By the Fall of 2022, it was worse. My PCP (primary care provider) referred me to a gastroenterologist who performed an upper GI endoscopy (EGD). The EGD showed nothing abnormal. Because acid reflux can cause dysphagia, I was prescribed a stomach acid inhibitor which I took for two months, but my dysphagia continued.
In December of 2022 I started having pain in the back of my head on the left side. At first it was barely noticeable, but as time progressed it became slowly more pronounced, especially when swallowing.
In January of 2023 I saw an ENT (ear, nose, and throat) specialist. He scoped my throat and sinuses but didn't see anything abnormal. He ordered a CT scan of my sinuses and a modified barium swallow test.
The CT scan showed nothing of significance. The modified barium swallow test showed that the hyoid bone in my neck was not elevating properly (necessary for normal swallowing function), and that the muscles in my throat, including my UES (upper esophageal sphincter) might be weak. The test conclusion was "mild pharyngeal dysphagia."
In late January I saw the same ENT again, this time complaining about the pain in the back of my head, which, along with pain when swallowing had become considerably worse. He seemed perplexed and referred me to a neurologist. He also ordered swallowing therapy.
In early February my PCP ordered a CT scan of my brain. It showed nothing of significance.
It wasn't until early May that I was able to see a neurologist (that was the first available appointment). He ordered an MRI of my brain. During a follow-up appointment in early June the neurologist said my MRI showed nothing abnormal. He concluded that my head and swallowing pain was due to some kind of neuromuscular or degenerative problem (like arthritis). He offered no further advice or referrals.
In July I asked my PCP for an x-ray of neck. It showed nothing that might be causing my pain. I discussed the situation with my PCP again. He was out of ideas, so I suggested a chiropractor.
I paid, out of pocket, to see a chiropractor that my neighbor suggested. He did a full evaluation and initial treatment. His intuition was that my problem was possibly acid-reflux (30% chance), musculoskeletal tension (70% chance), or something to do with the vagus nerve (which I brought up during the evaluation). I felt no relief whatsoever after the treatment.
At this point of my journey I had invested over ten months of time and energy into trying to figure out what was causing my dysphagia and my pain. I had been to three different specialists (a gastroenterologist, an ENT, and a neurologist), and I saw my PCP five times. Not once did any of those doctors mention the word cancer, nor was any soft-tissue imaging (CT scan or MRI) of my spine, neck, or oral cavity suggested.
I had lost faith in my PCP. I knew that something was very wrong in my body, and it was up to me to find out what it was.
Thinking back to other specialists I had seen in the past, I recalled a nurse practitioner (named Kelli) at a spine clinic that I had seen for a nerve issue. I made an appointment and in late August I told her my long story. She suggested we do an MRI of my cervical spine.
In September, while I waited for my scheduled MRI, I saw a second ENT (actually, an assistant to an ENT), to get another opinion. I told her my story. An endoscope of my sinuses showed enlarged nasal turbinates but nothing that would be causing my pain or dysphagia. Once again, no imaging (CT scan or MRI) was suggested.
In early October I had a follow-up visit with Kelli. The MRI showed there was a neoplasm at the base of my tongue. Thinking it would show more detail, Kelli ordered a CT scan which showed that in addition to growth at the base of my tongue, there were two smaller growths on my neck. Kelli referred me to yet another ENT.
A week later, with the MRI and CT scan in hand, I saw my third ENT and told her my long story. Using an endoscope, the ENT was able to see the growth at the base of my tongue. She gave me a list of referrals to head and neck oncology doctors. She also said she was surprised that someone had not discovered the abnormal growths earlier in the year.
Abut two weeks later a biopsy confirmed what the MRI and CT scan was showing. My official diagnosis was stage 3 metastatic squamous cell carcinoma.
My cancer treatment protocol was a marathon
My treatment protocol was five radiation treatments and one chemotherapy treatment per week for seven weeks. For each radiation treatment I had to wear a custom-built mask which fit over my head and upper torso, and a mouthpiece, both designed to keep my upper body and head absolutely still during treatment. The chemotherapy treatments were long, running 3-4 hours, consisting of four different infusions (two for nausea, one for the cancer drug, and one for hydration).
Prior to each chemotherapy treatment I had blood drawn to monitor what effects the drug was having on my immune system.
It was a long and challenging marathon.
To make things worse, because I was aspirating small amounts of food and liquid, I was put on a feeding tube before treatments began. This was done to minimize any risk of contracting some kind of lung infection, which would be very problematic during treatment. I started using the tube about a month prior to the start of treatments, and I was on it for five months. Why so long? After the completion of treatments I had to wait another three months before a PET Scan could be done to see if there was still any cancer in my body. I craved solid food during treatments, and being able to eat solid food again after the tube was removed was pure joy!
I lost about 12 pounds while on the tube, which was about nine percent of my body weight. It took me several months to gain all the weight back.
Another complication was constipation. I was taking a drug called Tramadol for my head and swallowing pain. What I didn't know, or perhaps didn't pay enough attention to at first, was the fact that Tramadol can cause constipation. I mean CONSTIPATION! It was so bad that one night I had to go to my local hospital emergency center.
The anti-nausea drugs I received later during treatments also caused constipation. It took me a while to figure out what anti-constipation protocol worked for me.
Post cancer treatment challenges
Radiation in the oral cavity causes two major side-effects: a) fibrosis (muscle tightness) in the neck and face, and b) damage to the saliva glands.
The only treatment for fibrosis is stretching, which I do on a regular basis. The tightness isn't a major problem for me.
Changes to saliva caused by radiation include: a) a slight increase in acidity, b) less water content, making the saliva more like mucous, c) a lack of digestive enzymes.
The increased acidity increases the amount of tooth-damaging bacteria in your mouth. To address this, I do fluoride treatments several times a week to help strengthen the enamel of my teeth. I've also had to step up my dental care routine to include brushing after every meal, using a tongue scraper, and using an effective bacteria-killing mouthwash twice a day.
After my cancer diagnosis I thought I had found the reason for my dysphagia. Not so. After treatment my dysphagia is essentially unchanged. We aren't aware of it, but we produce and swallow saliva all the time to help keep tissues moist. Swallowing normal, more liquid saliva isn't a problem, but swallowing "sticky" mucous-like saliva is unpleasant. Because I still have dysphagia, when I swallow, some of what I'm swallowing remains in my throat. When you add to that my chronic post-nasal drip due to airborne allergies, the only way I can clear everything from my throat is to cough it up and spit it out. This happens all the time, in varying degrees, even at night when I sleep. Simply put, it's a nuisance.
A swallow study done after my cancer treatment showed that my UES (the "valve" at the top of my esophagus) is closing a bit too soon when I swallow. The result is that some food and/or liquid remains in my throat every time I swallow. The study also showed that the upper 2-3 inches of my esophagus is narrow and constricted.
In September of 2024 my oncology surgeon performed a dilation of my upper esophagus. Unfortunately, my dysphagia did not improve.
Because of the radiation, there is a fair amount of scar tissue at the base of my tongue. It has affected my speech to some degree (certain words), but overall my speech is still intact.
Chemotherapy can cause neuropathy. I had mild neuropathy in my feet and lower legs prior to treatment. Post treatment, I would say my neuropathy is slightly worse, but that may be due its slow progression over time and not the chemotherapy.
Here's what I've learned
First and foremost, I learned that you can't depend on our healthcare system to diagnose serious health problems in a timely manner. In general, our healthcare system is very good at treatment, but not always good at diagnosis. From my perspective, there's no way it should have taken one year to figure out that I had cancer. I know someone who's gone through a similar experience. In her case it took about two years to finally receive a diagnosis. That's just not acceptable.
You might ask why, at some point during my long journey to discovery, didn't I consider the possibility that I had cancer. It's a good question. Thinking back I probably should have, but hindsight is always 20/20. First, when you're experiencing long-term, abnormal pain, you're preoccupied and not always thinking clearly. Second, I was, and still am, one of the healthiest people I know. I've been working out at the gym for over 45 years, never smoked, drink very little, and I eat a very healthy diet. I think this is one of the reasons my body was able to endure the treatments, but it's also a reason I never suspected cancer. Third, I think I just assumed that the doctors I was seeing would be able to figure out what was wrong with me.
If my cancer had been detected earlier I might have been at stage 1 or stage 2, instead of stage 3, my treatments may have been less aggressive, and my side effects might be less.
I am very happy to be alive and disease-free, but something needs to change in our healthcare system.
Finally, when I was diagnosed with cancer, I thought and felt that putting my body through seven weeks of radiation and chemotherapy would be too much to endure, not just physically, but mentally and emotionally as well. I considered not having the treatments, opting instead for assisted suicide when the time was right. After careful thought, I decided to frame what was happening as just another life experience, challenging myself to see if I could actually get through the treatments. Now, two-and-a-half years out, I'm really, really glad I did!
Based on my cancer experience, here are my top-ten takeaways:
- Don't depend on doctors and our healthcare system to provide all the answers.
- Do extensive online research and learn to become your own personal wellness advocate.
- Because imaging (MRI and CT scans) reveals a lot, be assertive when you talk to your doctors and when appropriate, demand that imaging be done.
- Stay fit and eat a healthy diet.
- Realize that cancer can afflict anyone, even those who are healthy and fit.
- Understand that with today's advanced, targeted cancer treatment and immunotherapy protocols, a cancer diagnosis is not necessarily a death sentence.
- Seek and accept ongoing support from family members and friends during your journey.
- Consider keeping a journal or blog to help you process your experience.
- Maintain a positive attitude and take one day at a time, knowing that eventually things will get better.
- Know that you are way stronger and way more capable than you might think.