Cheryl, thanks very much for your post, hugs and welcome. I hear you about the docs saying "incurable". Having said that, the two who did followed up by saying that it was survivable.
Yep, I'm being seen at a CCC (Vanderbilt). Over the last 17 years, I've been getting most of my care at the Veterans Hospital, which is staffed by docs from Vandy. Matter of fact, the VA hospital is right next door to Vandy and even has a bridgeway-type thing that connects the two facilities. Three of my VA docs are also assistant professors at Vandy (ENT attending, CO attending, and my pulmonologist) so I'm getting quality care from the VA.
The VA doesn't do rads so I'm going to Vandy for it while getting the chemo at the VA. The RO I have at Vandy is also an assistant prof there and I also went for a second opinion on surgery to another Vandy prof who specializes in ENT reconstructive surgery. Neither she nor the VA ENT attending want to do surgery.
Back to the "incurable" part, we are going for curative rads instead of palliative, which was the RO's first recommendation. There are well known risks involved, which I've discussed with my docs and family, and it's the course I've been favoring for a while.
One thing I didn't mention previously was that I also have two presumed cancers in my lungs. They won't say either is definitely cancer because they don't have tissue samples that say so, so they can only say "presumed". One is right upper lobe and showed up on PET and CT scans shortly after the BOT/pharynx/oropharynx biopsy and it responded to chemo, so is presumed metastatic. The other is left upper lobe and was there before the BOT ca and did not respond to chemo, so it's presumed to be another primary cancer. Anyway, those two lung nodules have complicated things for everyone involved and they're the main reason none of the docs want to go to full curative mode for the OSCC. They're afraid if they do, they will also be compromising my body to attack from the lung cancers as well as any other metastases that pop up or even to more new primaries, which wouldn't be a surprise given my history and my family's history of cancer.
My cases have been presented to the VA head/neck tumor board, the VA chest/lung/pulmonary tumor board, and the Vandy head/neck tumor board. I have a good comfort level knowing that my cases have been reviewed by three multidisciplinary panels of experts in their fields.
I think you are right about the palate ca, the Vandy ENT said the palate usually responds well to rads, which the RO agreed with, so we'll be targeting the palate along with the other head & neck areas. We won't be doing the lungs at this time though.
Guess I need to update my sig to reflect the lungs, just in case anyone is interested in seeing more of the full picture.
Thanks again for your input, I really appreciate it.
Hugs and best wishes to you.
Edit: forgot to mention that the latest tumor board was split 50/50 on whether to pursue curative rads or palliative rads. The RO said there was much discussion of the pros and cons of each type of rads (surgery deemed not a good option, chemo already underway and rads would be concurrent with them). I've been seeing him over the course of the last year, about 4 or 5 times so far, and he was initially hesitant to do rads at all, since the tissues there had already been zapped after my first cancer. Then he gradually was moved to the stance of doing palliative and now he is willing to do curative. He said a doc whose opinion he most highly respects and has been a mentor of sorts to him, was one of the tumor board docs in favor of doing curative rads. It's what I have wanted to do as well, so we're going that route.
