My Nonprofit Reviews

It was back in 2019 when my regular dentist was doing a routine dental exam. She grasped my tongue with a piece of gauze, and said something to the effect of “and what do we have here? How long have you had this white spot on the bottom side of your tongue?” My response, mouth full of gauze, was “what white spot”.

She was adamant that I needed to come back in two weeks, and if it had not subsided, she’d refer me out for an oral surgeon for a biopsy. She was great at teaching me the seriousness of staying on top of this painless white lesion, that could potentially be cancerous. I knew nothing about oral cancer, except that chewing tobacco greatly increased your odds of getting it, and I was not a user of tobacco products.

In the meantime I did a little bit of research on tongue cancer and I think a google search led me to the Oral Cancer Foundation website. I never knew how deadly and aggressive oral cancer could be. In my mind it was likely similar to a squamous cell carcinoma of the skin, something you did not want to let go untreated but not a huge deal. SO WRONG. After reading various folks posts on their anecdotal stories of their experience, I read some of the scientific journals and articles on Oral Squamous Cell Carcinoma.

Because of the COVID Pandemic I think it was almost a year before I had my first biopsy. The oral surgeon did not seem very concerned about the small, painless pencil eraser sized white lesion (leukoplakia is the medical term) on the right underside of my tongue about midway back to my molar teeth. He was insistent that biopsy specimen be sent to a particular oral pathology laboratory, regardless of if it was approved by my insurance company. Oh, I forgot to mention I picked this guy, because he himself was an oral cancer survivor, his jawbone cancer found on a routine dental X-Ray. I was like, I am willing to pay a few hundred dollars out of pocket if needs be to go this top notch oral pathology company. My insurance paid for it, they were a preferred provider I believe.

He was greatly surprised when it came back from the pathology lab indicating the tissues exhibited “Moderate Epithelial Dysplasia”. The oral surgeon explained that this was considered a potentially malignant disorder, and that I should follow up with an oral surgeon who specialized in cancer and potentially precancerous conditions.

That is when I think I made my first post on the patient forums of the Oral Cancer Foundations (OCF) website. I also began doing a much deeper dive into the technical papers, the various professional medical and educational links OCF had provided on their website. I discovered that I had roughly somewhere between a 1 in 10 and 1 in 4 (10 to 25%) chance of my lesion’s area tissue converting into oral squamous cell carcinoma.

I had learned from OCF articles and patients that once diagnosed with dysplasia, one should probably be seen by an oral cancer specialist yearly, for life.

My first oncology oral surgeon saw me for I think almost 2 years, before moving out of the area. OCF’s influence on me, their patient stories and educational materials, as well as my original discovering dentists very serious advising of me to stay on top of this thing worked. I had to get established with a local medical system to get a referral to see the next oncology surgeon, whom my previous doctor had recommended. I think I saw this next doctor for about 2 years. I had 2 regular appointments. Then roughly 4 years after the first biopsy about 6 months before my regular annual appointment I noticed that the area near the biopsy scar had a tiny pimple like projection that was sore.

I got on the OCF forums and mentioned that, and several of the veteran members were like “Biopsy it!”. I was about to mention it in a patient message to my doctor’s office, and it went away in a few weeks. A month later and it was back, and now steady. So I did send a picture of this tiny pimple, barely visible, to the doctor and described that the new feature was it was painful.

He ended up making an earlier appointment for me, looked at it, and could barely find it. Said he could biopsy it right then, but it did not look very concerning. I was not expecting a biopsy that day, as the last doctor required a bunch of up front paperwork and scheduling and such. He said I could probably just follow up with my regular dentist (something I was never going to do, based on what I had read on the OCF forums and website, and also thankfully three previous dental/medical professionals had instilled in my the necessity for lifetime close monitoring with someone who treats cancer daily). The other option was to come back in 3 months and decide to biopsy it then.

The day after he probed the lesion with the wooden end of a cotton swab, I was like, man, now that thing is on fire. I am definitely asking him to biopsy it Dec 2023. Again got back on the forums, and it really helped me stay insistent to pursue the re-biopsy of the area and this pimple like lesion.

The surgeon does the biopsy, was the most pain free oral/dental procedure I had ever experienced. My previous tongue biopsy not so much, the lidocaine needle for my first procedure was red hot intense pain. He joked that he kind of had to biopsy the location by feel, as it just was not readily apparent where exactly to excise, but he was fine with going ahead and doing the procedure as that was my desire.

My insistence on that biopsy was about 50% due to what I had learned from OCF and 50% from my previous doctors. Because of the extent of the pain of my first procedure I may have been unconvinced with the need to go through it again if the doctor was on the fence himself and did not think it was necessarily indicated. To me the red flag was the change, the pain and the raised nature of the bump. Happily, the second biopsy was pain-free, and I would have gladly went back to that surgeon for an annual biopsy if needed.
A couple weeks later January 2 2024 the oral surgeon calls me with the biopsy results. Microinvasive Oral Squamous Cell Carcinoma. He was very apologetic of not pushing for the biopsy as being absolutely indicated in my case. I was very appreciative of his skill, and said I understood, it was not anything you would see in a textbook as likely cancer. He said that the margins were clean, but much narrower than he would want around a nascent cancer tumor just starting. He wanted to set me up with an in house oncological ENT surgeon.

This was all at my states flagship teaching hospital, an a NCI designated Comprehensive Cancer Center. From my readings on OCF and other sources I had long since decided that if I was ever diagnosed with an actual cancer I would seek treatment at the flagship Comprehensive Cancer Center in all of New England with the strongest oral cancer program, and that I my particular tumor was some rare odd variety I’d seek treatment at the best CCC in the country, taken a trip if needed. I am young enough that I was and am willing to go to pretty large measures to get my next 3 or 4 decades of life and quality of life.

Again I credit OCF for giving me the background knowledge to know you can request such referrals, don’t be afraid to ask second opinions, don’t feel disloyal if you would like to be treated by a different organization etc.

I was surprised how happily the cancer finding oral surgeon was to set me up with a referral to this other agency. He even recommended a specific colleague of his, well regarded even at that institution.

The next ENT Oncology surgeon did a small partial glossectomy, just taking wider margins around the original excision and also scoped my throat looking for any other evidence of disease while I was under general anesthesia in a regular surgical suite at a major hospital.

Anyway OCF and the OCF forum and patients who have “been there, done that, and got the T-Shirt” are great sources of encouragement and information FROM THE PATIENTS PERSPECTIVE of what to expect, what questions to consider asking, how things progress treatment plan wise, what things mean etc.

When you are at the doctors office and he is explaining things about your cancer, in a newly diagnosed patient, it was to me, a bit like the television scenes where there is a lot of white noise in the background as the doctor is talking. My wife was there, and took copious notes, and my situation was not as shock inducing as many, but one could easily imagine if the doctor is giving a bunch of dire news about the need for a slew of aggressive treatments, that experience would be “shock and awe” to a terrible extent.

The OCF forums helped me organize my thoughts, as I kind of chronicled my experience in my entry in the “symptoms and diagnsosis” sub-forum. It was helpful for me to be able to kind of journal what happened and when, and how things developed, and to get near real time feedback from other cancer patients, again what questions to ask, different things to think about post surgery etc.

So OCF is a great resource to me in education, moral support, pre-surgery encouragement, recovery encouragement, encouragement in the progress of research and treatment methods and options.