Hiya!
My name's Jo. I'm forty and I have polymorphous low-grade adenocarcinoma (or, rather, HAD that diagnosis!). Nine days ago I had a 1 x 2 cm lesion removed from the right side of my soft palate, along with most of my soft palate and a truly shocking amount of my hard palate, and one tooth. And my uvula. And I'm sure I've forgotten something there, though I'm fairly sure the surgeon left my brain alone.
Ironically, I work as a surgical ICU RN at a huge academic medical center. Two of our areas of expertise are head and neck cancers and neurosurgery; we also have a NCI-recognized CCC center. The guy who did my surgery is one of the few people to have seen hundreds of PLGAs over his career.
Which brings me to this question: today was my first follow-up appointment with the surgeon. My PET, MRI, and lymph biopsies were all clear--we knew that going in to surgery--and he was very aggressive about the resection. He got excellent margins, better than a centimeter each way. He told me that he'd run it by the head/neck oncology guys and the tumor conference this week, but that in his opinion, I would not need radiation. His exact words were, "We'll see what the conference says, but if it were my head, I wouldn't radiate. The side effects would be much worse than any extra certainty you'd get."
The tumor itself only flared at 3.8 on the PET, and though there was some perivascular and perineural involvement in the first biopsy specimen, that specimen was taken from the center of the lesion. The final diagnosis from path is low-grade, period.
I would like to avoid radiation, frankly. I'm terrified of it, mostly because I see the worst-case scenarios over and over at work. Besides the stomatitis and the esophagitis and all that, though, is the feeling that if I can, I'd like to put my head and neck through as little trauma as possible. I know that this type of tumor can recur, but it'd be slim chances, what with the small size of it and the good margins.
Anybody got any experience with this sort of thing? I'd be interested in hearing your take on this.
And boy do I wish I'd found this form six weeks ago, when I was first diagnosed.
