I just had my first RAD treatment yesterday. I am very claustrophobic so it was a little tough on me with the mask but with some Ativan and eye holes cut out, I got through it. I have stage 2 Parotid Cancer (Mucoepidermoid) so I am interested in ANY information from those that have gotten through the treatment or are still in it. My treatment area is much larger than I had thought originally. RO is treating from just above the top of my right ear, down along my face (where Parotid tumor was) and down to just past the lowest tip of my scar on my neck from the removal surgery! I have a large support group of generally UNsupportive people. My husband is stressed beyond his limit. He is sleeping all of his free time away to cope. I have 8 kids - 7 sons and then a daughter. My oldest is 29 and my daughter is only 12. My mother is alive, but highly unable to deal with this stress and continually changes the subject to talk about her own aches and pains and refuses to wear the Head and Neck Cancer support bracelet I made for her because she says "it makes it too much in her face." So, I am very fearful and alone generally and I really need to hear from and share info with people who understand what it's like to be going through all of this.

I have 30 treatments planned, but when I saw the RO today, he almost sounded as though he may add a few. My PET scan results came in after he had made my treatment plan. I have two tonsil beds that lit up and were termed "reactive". The RO examined them today and said that they look fine but need to be "watched" as this type of cancer often spreads to the tonsils/or their beds if they have been removed.

After ONE treatment, I am feeling some mild burning in the very back of my throat/base of my tongue. I find it very hard to believe that this could be the radiation treatment I just had because I have read and been told that the real issues develop between weeks 2 and 3 of treatment, but I have a distinct feeling of burning back there like when you swallow a piece of food that was too hot. Did anyone else feel effects right away or am I crazy?

Because of the size of my treatment area, I am thinking that I will likely have difficulty with swallowing, mouth sores as is typically seen but also I may lose the hearing in my right ear and the RO said that because my Parotid tumor started right at the very end of my jawbone, there is a need to irradiate that area, unfortunately. He wanted to try and avoid bone. So, I guess I can watch for osteonecrosis as well in the years to come.

I have baking soda and Celtic salt mouth rinse, Aloe vera for my face *after* treatments and a mouth spray I made out of Chamomile, Calendula and Sage oil to moisten my mouth, heal it and freshen it while I am healing. Anything else I should get and use right away? Oh -- I also made my own natural toothpaste without mint or fluoride.

THANK YOU for any help.
Tracy