I'm starting a thread here, although I actually just posted this on another (PEG Tube one), as I didn't understand the system - sorry for the repeat.
Since @ Oct been going through the diagnosis process. Starting with maybe a little acid reflux causing voice box burn...through left cord T1a small cancer (pretty much removed in biopsy), when CT/PET was read as full larynx deep tissue involvement and a node on right side. Vocal cord cancer doesn't travel, so the node thing was weird, and the Larynx didn't visually seem bad. Turns out, many Drs disputes and tests later - now with the super world famous type), the CT/PET read was wrong. There is a confirmed by biopsy right side tonsil HPV cancer, the right node occurring from it, and the vocal cord, totally independent but frankly not terribly concerning. (2 primaries).
Likely Treatment - (another Radio Cr review next week - and some more pathology - but probably) -
The one uncommon thing I guess is that using a unilateral radiation (only to the effected tonsil) is recommended. The NY hospital and team have been doing this for many years now with great success. Of course, the benefits of only one side exposed to loss of saliva and such is great. Generally, it is thought that the lymph node will clear itself if the Radio of tonsil is successful, and the vocal cord (again which is a stationary cancer), presuming pathology re-confirms cleared with broad margins (and is almost healed), to also NOT screw around with. Obviously, I'm going to be living with an ENTs head in my throat every few weeks for the next years, and all this is conditioned on keeping close watch. Anything appears on vocal cord acting quick - but no Rad there would mean quick and easy surgery is still a great option. If left Tonsil gets involved, again, there early...figure out what, I guess maybe Radio it. Cross that bridge if/when I get there.
I believe we would do a Chemo too...probably Erbitux (more tolerable), and doin that will encompass not only the tonsil, but the vocal cord and rt lymph node too...basically a prophelaxis (and maybe a bit of curative) to the whole area.
Some situational things:
Of course this all came about at a terrible time of life for me. Cancer can be very inconvienent! I had just come back from the southwest (where I was living for a year and then my Co closed - job gone) to NJ, where my house had just sold...and basically put everything in storage and living at GF condo as this all happened. Damn selling my home was the stupidest thing I have ever done. I miss having my things around me and sure I will more as this goes on. The not working, not knowing future and all doesn't help. The Drs I'm now using, and the ones most familiar with unilateral approach, are NYC based. Like an 1.5 hour commute from where I am in NJ. Making taking treatments there even tougher. Even if staying with a friend in the city, where again, I'm going through this without my own bed, my own stuff - bathroom, etc. We are seeing how a seemingly highly proficient (albeit not my favorite personality) Radio with a center 5 mins away feels about doing it, hopefully with direction from the NYC ones. That at least makes it a bit easier...and I'll just have to put life on hold for lord knows how long...as interviewing, or taking a job during this is crazy/impossible. And even getting my own place, again because where the treatment is is no where near where I would want to live, also impossible.
New Concerns - especially from reading all this:
The PEG has not been discussed recently, and when it was back when - I think they thought it wouldn't be needed. I get the impression here that is just not so. And that it may well be better to be prepared than waste away and have to have it put in while weakend. The Erbitux I thought was so tollerable that, other than some skin issues, it too would't be life disrupting. In fact, I was specifically told that there would be minimal interruption to life...if I was working that I could absolutely continue, with just coming in for the few minutes of Rad before or after work. Again, I'm getting the idea, that while many here may have had more surgical along with Rad/Chemo that all may be more of a hoped for and exceptional result than standard. I see that many find they need pain meds a lot. Is it more from their surgery or fro the rad treatments? Anyone have trouble with their Dr not appreciating the pain, or depression, or being too worried about prescribing? (I mean i can see where some Valium for the next weeks is not a bad idea).
Sure, any suggestions advice I'd appreciate, or yapping with any going through it too. Seems I've got about a week before things start getting ugly!
Sort of kiddingly: I'm the unluckiest person in the world! I mean I get Cancer and should have lost weight..no I gained like 12 lbs...and the Big C...the excuse...start forking over that medical marijuana...and send the bill to CIGNA please...oh thats right...i got throat cancer...i have enough trouble with air, forget smoke!