If yours were an HPV positive cancer I would have a very definite opinion. Those cancers respond very well to radiation, and we now have seen excellent results over a period of more than 4+ years in de escalation trials of people at half the radiation dose having complete resolution of the cancer, with few of the long-term consequences of 65 gys over six to seven weeks of treatment. But yours if you are a non smoker (please comment) with an unknown etiology, are not eligible for that.

There isn’t a scientific answer that is black and white to your question. We have seen people have surgical only solutions and do well. Others have multiple recurrences and surgeries to resolve them. The cancer keeps returning even with what appear to be clean margins. They survive all these, but it’s a reoccurring issue every few years. People that have follow up radiation do not seem to have to deal with the recurrences. But they do indeed live with significant long-term issues that arise over a protracted period of time. Some of those you mention, but there are far worse ones. They are mostly things that are livable, but there is no denying that they compromise your quality of life sometimes in the extreme. I had lots of radiation, before IMRT and its improved targeting. My life is full of difficulty and compromises after about 18 uneventful years.

The issue is often that these tongue cancers are not focal areas of cellular conversion. It’s related to something called field cancerization. The surgeon gets clean margins, but in surrounding tissues there are cells that are not cancerous but dysplastic, meaning they are changing from normal to malignant and are at some in between stage of transformation. It not surgically possible to keep cutting to try to remove all those small areas as the size of the surgical field be one very large and that has significant life impacts of its own. A larger field of removal could be grafted with muscle from somewhere else in your body, but again a more involved process, and if too large is harder to ensure you will have full movement of that part of the tongue. These are all questions to discuss with your doctors. Everything has trade offs. And I do not think there are any absolute answers. You don’t mention etiology, and that would impact your decision.

I did not have a choice about radiation. My disease was very advanced. I would in todays world even at similar doses, have had a much more confined field of radiation that was closely mapped. That might have eliminated some of my worse after effects. They are really bad but I would not assume that your experience with IMRT radiation would be the same as mine with XMRT. You might explore getting more targeted proton beam radiation which is more sparing of surrounding tissues, but it’s usually very targeted, and that’s not why they are recommending your radiation. They want to paint the surrounding areas. Please let us know what you decide and their arguments for their recommendations. I wish you good luck no matter your future treatments. B