Intro and radiation time
I'm a 47 yo male. I was diagnosed in early August via a FNA of a left 4.6cm node which revealed SCC (p16+).
No visual of the primary was found via several (awake) scoping attempts. PET and MRI seem to indicate a small-ish primary on the left tonsil, but everyone across multiple teams at multiple hospitals had different opinions. Some saying it's clearly on the left tonsil and others saying they don't believe so. It's hard to make an educated, informed decision about treatment when there is so much variety of opinion.
After far too much research on the interwebs and reading of peer-reviewed papers on every possible related subject, and with some careful consultation with many docs at Stanford and UCSF, I decided a laryngoscopy and tonsillectomy (left only) was the biggest bang for the buck at the moment - aim for the likely primary and extract it. Tonsillectomies are very common and I snore anyway, so if nothing else my wife will be happy afterwards.
I'm T+6 days out now from surgery (Laryngoscopy, tonsillectomy (left only)) and no word yet from pathology. But my wife confirms that I no longer snore. Yay!
Assuming I get clear margins on a found primary on the tonsil, there's just the node(s) to deal with and I'm looking at more surgery and/or radition as far as I know right now.
This whole decision process has been confusing for many reasons - as you all know - but the way tumors and "cancer" are measured (visually, PET, MRI) in order to make treatment decisions confuses me further. My understanding of radiation (and chemo) is that it's both targeted to known tumors and a "clear up everything we can't see" treatment, but then I see things like:
- "Scans and scopes show I'm cancer-free so no more treatment!"
- "After radition, all my tumors disappeared and treatment is done"
How can one claim "tumor free" when the modalities used to measure tumors only have very low resolution and/or cannot detect the microscopic bad guys? I can't even get straight answer from the docs on this one.
Not surprisingly, but disappointingly, the surgeons wanted to cut and the radiation oncs wanted to radiate, each claiming theirs was the better treatment plan and the radiation onc actually citing 5% general anesthesia risks to make her point! This does not give me loads of faith in my "team". At the end of the day, people (and doctors are people too) just want to do good work, high five and go home. It's rare to find a doc or a team that aggressively works with you on a wholistic treatment plan that puts you first considering all of the outcomes and modalities.
My hope is to find clear margins on the tonsil and do a partial neck dissection to clear the bad nodes and skip radiation. I know radiation results can be different for different people, but for a ~90% efficacy treatment with so much potential for disasterous short-term, permanent and 10-15 years out surprises, I just can't see the need unless there's a very specific something we're aiming it at.
I'm wondering if anyone else has shared this particular journey or something close to it?
Great reading all of your stories and to find such a helpful community!
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