I wanted to post an update about my experience. I was diagnosed with stage 4a SCC in march 2016. The doctors I saw recommended a partial maxillectomy, by that time I had already lost 6 teeth so the maxillectomy would have been pretty extensive and I decided not to have surgery. I had heard about proton therapy and did my research into various treatment options and with 2 NCIC ENT cancer surgeons and 3 proton therapy oncologist. All recommended surgery followed by radiation except 1 of the proton therapy organizations. I was very impressed with the doctor at this proton facility, he spent about 2 hours explaining his background treating this type of cancer, what areas would be treated, and answered all of my questions, so I choose this facility for treatment. I knew going in that this type of cancer had a fairly high recurrence rate, 40%-60%, for which I was told that if it did recur the area could be retreated.

I went through 42 proton therapy treatments, my post treatment MRI showed the sinus was full of something, probably infection, so they couldn't see if there were any signs of the tumor. I had another biopsy in February 2017 with the original ENT surgeon, which showed cancer cells still in the maxilla but the sinus looked clear. I contacted the the proton doctor about treating the area again and he said he would have to check on it. I contacted him several times to see if proton was still an option, however he never responded and I eventually gave up. Shortly after the February biopsy I developed a knot under the skin on the side of my nose and a blister on the skin that started oozing puss. I was on 3 different oral antibiotics but it just got worse, the surgeon said he believed the underlying cause was the cancer and it would not heal properly until the cancer was removed. At this stage of my life I'm still not considering surgery, which is likely to be more extensive than originally thought. I am considering chemo since for SCCHN chemo is require before you can be treated with the new immunotherapy drugs.

The point of this post is do your research before deciding what treatment option(s), if any, are right for you and thoroughly check out the doctors you will be working with. I found one who told me what I wanted to hear to get me in the door but, from my perspective, forgot about me once my original treatment was completed.