I’m a 69 year old non-smoker male with a history of leukoplakia for the past 12 years. The leukoplakia growths have been removed three times and a biopsy conducted before and during each procedure was negative. The last surgical removal procedure was done in 2017.

Everything was fine until the summer of 2022 when I felt some hardness of the surface of the tongue. A new biopsy was negative and my ENT ordered a CT scan which was also negative. Things changed quickly in November when a lesion/sore appeared on the surface of the tongue. Eating became extremely difficult as anything that touched that area of the tongue was very painful. A surgical biopsy was performed which was positive for squamous cell sarcoma. A PET scan indicated that should there be lymph node it would be on the lef side. A week later, December 15th, the tumor was removed (partial glossectomy) and a left side neck dissection was done. Level 1-4 lymph nodes were removed.

The surgical pathology was generally positive, a T2N0M0 tumor. No neural involvement and all lymph nodes removed tested negative. There were two areas of concern however; the tumor depth of invasion was 7mm and though the margins were clear on one side of the tumor the margin was 1mm.

Initially my ENT suggested I’d be a candidate for observation however a radiation oncologist recommended adjuvant radiation (photon based).

I then consulted with a RO at Memorial Sloan Kettering. MSK recommended proton based radiation and offered a ‘revised protocol’ they were investigating wherein radiation would only be applied to the neck only under the guise that should there be a recurrence it would more likely present in the neck rather the primary site (tongue). I understand the intent of trying to spare the oral cavity from radiation but I wasn’t comfortable with being part of a revised protocol approach.

I subsequently met with both a second ENT and a second RO. The second ENT agreed that my case falls in a grey area and a case could be made for either observation or radiation.

The second RO is at ProCure. We had a long detailed discussion regarding proton-based radiation but he too could support a decision in either direction.

I had a new set of scans done this week in the event I proceed with proton radiation. Both the PET/CT and a CT with contrast scan showed no signs of malignancy. These were done 7 weeks post-surgery.

I’m still undecided whether to proceed with adjuvant radiation or follow a path of observation. If I understand the numbers correctly my risk of recurrence without radiation is approximately 15%. Radiation treatment could drive the number down to approximately 5%. Should there be a recurrence the treatment options are more dire which would likely result in more of my tongue being removed and radiation at that time. On the other hand, starting off at a 85% chance of being cancer free is not a bad starting point.

I’m terrified of going through radiation and dealing with the side effects but am trying to balance that against driving the recurrence risk to as low a level as possible.

There’s no correct answer here and am struggling to make a final decision. I’d appreciate any insight from folks who had to make a similar decision.