I was diagnosed with the same cancer on my right tonsil in May. I was told that surgery was an option but that 80% of patients with this type of cancer opted for radiation and/or chemo without the surgery. There was a possibility that the surgery alone could clear the cancer obviating the need for chemotherapy or radiation. I decided to try the surgery but the scheduled date was nearly two months out. I called Mayo as an alternative to the suggested surgeon and fortunately was given an appointment within three weeks. The cancer began to grow rapidly so by the time I saw the surgeon, he ordered another MRI to ascertain whether surgery was still advisable. He said the surgery would be disruptive and potentially injurious to my throat given how large the tumor had grown. I would still have to undergo the same course of radiation and chemotherapy even if I chose surgery.
I chose to not have the surgery.
I live 2.5 hours drive from Mayo so when their radiation oncologist called me (the very next day after the consultation where I opted out of surgery) I asked why I should travel to Phoenix rather than having the treatment where I live. When he explained the benefits of proton radiation therapy over photon (X-ray) radiation, I immediately decided to be treated at Mayo. I have never made a better decision. Mayo is so far superior to any healthcare I have received in the last 20 years. The entire process of treatment seems to have been planned with the welfare of the patient as the priority. From the check-in desk to the care teams, every person my wife and I encountered was compassionate and supportive. The waiting rooms for radiation and chemotherapy are specifically designated for those particular patients. We found such comfort and support talking to other patients and their partners while awaiting treatment. We made a number of friends during the 7 weeks we were there.
I was enrolled in the DART study which is an investigation into the efficacy of reduced amount of treatment for HPV-related cancer, you may want to inquire about this if treated at Mayo. An amazing array of treatment support including a Speech-Language Pathologist, Audiologist, Social Worker, and Gastroenterology team advised us on every aspect and potential aspect of treatment. The care teams at Radiation Oncology and Medical Oncology (chemotherapy) were excellent.
I had 35 radiation treatments, one every weekday and 7 chemo infusions, once a week over the 7 week period. I am cancer free as per a PET scan and NavDx blood test in December. As some commented earlier, I followed ALL of the recommendations the various experts provided. I highly recommend Mayo for treatment. They have some accommodations right on their campus that may assist you if finances are an issue. We rented a nearby condo on AirBnB and came home on weekends. Best of health to you and your husband.

Mayo has a dietician in the oncology department that provided a lot of good information to us. Protein, caloriesmand lots of liquid are key.

Thank you, all helpful. I’m doing everything I can to help him.

I just would like someone to take me seriously.how do I do that.i have hpv 16.a mass was found on CT scan at the base of my tongue on the right side.i feel it I have small limply like sores under my tongue.the Dr's here have dismissed the mass .they say it doesn't happen.in our area uvdont see it.im being blown off.i have enlarged bumps just on the right side my ear feels full hurts.trouble swallowing food gets stuck .but it doesn't happen I just had cervix removed due to koliocytosis .dysplashia.im very stressed out worry all the time. Under my tongue hurts alot.any suggestions where to go.i see what as an rn I see luekoplasia on sides of my tongue next to all the enlarged bumps.it feels thicker on the right side.im scared I'm reaching out to anyone that can tell me if it is the persistent hpv or precancerous how do I do that plz help

Hello Cindy. I agree with the first response. Take your test results and make an appointment with a completely different doctor. An Ear Nose and Throat. Doctor. ASAP!

@cris 2 It did not, but I don't think it's unusual. For me, the chemo's purpose was to enhance the impact of the radiation.

Send the oncologist a message on the portal and ask him if you should be concerned.

Good luck!

How many radiation treatments will be administered?

I did 35 myself for same ailment and have had 2 ENT surgeons tell me they are finding out that is overkill. That 3-4 weeks is suffice. Maybe w the chemo you still must do 35. I had surgery to remove tumor and was told there was an 83% or so chance it would not come back with the operation only. I added the radiation to boost that chance to 90-92%.

It helped me to freeze Boost and eat it like ice cream. I also lived on high protein smoothies and ice cream for about two weeks.

@cris2, how is your husband doing? How are you doing?