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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)Comment receiving replies
Hello @goldfinch and welcome to the Head and Neck group. You seem faced with a unique dilemma as most of us have had radiation everywhere but the top of our heads. I'm not a doctor, only a patient but if it were me, I would agree to radiation on the top of the noodle only and I mean only if it was Proton beam. If the doctor concludes that it would be photon beam then I would simply say "you first".
Thit Proton they can pinpoint a slice and keep it out of the gray matter. They can't do that with Photon. I think all of us who have had Photon radiation have had some cognitive issue of some sort. We of course don't know what we don't know but I for one lost memories, math formulas, ability to remember some foreign languages, etc. Don't mess with the noodle. But that's just my opinion.
There are now drug options such as Keytruda to keep SCC at bay if it is of a certain common subgroup. You could ask about that option.
Let's see who else chimes in here. When was this surgery?
Replies to "Hello @goldfinch and welcome to the Head and Neck group. You seem faced with a unique..."
Yep, I would definitely start asking the oncologist about chemotherapy options - from some quick reading, it appears that many SCC tumors have an excess of EGFR protein and there's a drug which targets this.
Below I'm linking a related research study to share with your oncologist. Note that the patients were in a much worse situation than you are. They couldn't have surgery to remove the SCC tumor and relied on the chemo alone - and a third of them were immunocompromised. You just need to keep any remaining cells from regrowing.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6996917/
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Thanks so much for the info. The surgery was in November, however the radiation was not recommended until January, after the genetic lab tests came back. Rick factor 2 or intermediate. Since then I've had a scan done to look at my lymph nodes (negative). I'm told I will need another in 3 months since I opted out of the radiation. Seem strange to me that all the lab tests come back clean yet I'm still advised for adjunctive radiation. I 'm finally getting a second opinion next week.