(I apologize for the cross post from the Introduce Yourself board)

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.

I just joined this group 5 minutes ago. My husband has almost your exact scenario. We are going crazy trying to decide if we radiate now, or leave it in our pocket for recurrence.

You are in an area many find themselves in. As lay people trying to decipher what is the best choice. As to the percentages you have quoted I’m not sure where those came from. Most of this is unknowable. Even if it were, we are all unique biological entities with very different genomes, and therefore biological response to treatments. Bottom line you are not a statistic and statistics do not apply to any singular individual.

I am curious about MSKCC’s stating that they would limit radiation to the neck. They are one of the best institutions in the world, with lots of experience and a deep bench of great doctors. But the experience is that recurrences are usually near the original focal tumor. Most of those are related to either dysplasia in the margin, or dysplastic cells in the nearby tissue finally moving to malignancy, around 18 months or more out from treatment. This is a by product of field cancerization.

I would want to understand their thinking on that before going further. Proton beam radiation is certainly more targetable and less damaging to surrounding structures. I’d be less concerned with its impact than getting all areas covered that might pose a future risk.

Posting to MBR
Recurrences are dangerous and getting primary treatments that do not leave you susceptible to them are paramount. Every patient that has had a recurrence of a late stage primary will tell you treatments for recurrence created more morbidity, and were significantly more difficult and invasive that the first. And the worst possibility is that they succumb to that event.

If you read back through hundreds of old posts here you will see a common theme. People with experience recommend doing everything possible to get it all the first time, the second is a bitch. Pardon my language, but that phrasing is often theirs.

Brian, thank you so so much.