HPV Tonsil cancer: I'm very nervous about chemo and radiation

Hi @johnschaar and welcome to the Head and neck group. Everyone is nervous about Chemo and radiation when it comes to treating head and neck cancers. The HPV+ variety appears far more responsive to treatment and far less likely to return. For myself and many others the routine was surgery and radiation only. This all depends on how invasive the cancer is. or rather what stage is considered.
I think you will find most doctors are not willing to treat patients who wish to drive the bus. I don't wish to get into a discussion between you and your wife. Perhaps she has a significant background in cancer treatments, perhaps runs her own cancer center with excellent results. I have no idea. But if you want the medical community to help you, then you must trust they will do the best they can. The only caveat is one should ensure the oncologist has significant experience with head and neck cancers, as they require precise treatment such as proton radiation as opposed to photon to minimize damage to healthy structures.
Anyway, not a doctor myself but I wish you the best. Perhaps others will jump in here to help. In the mean time, what stage was your cancer and what treatment(s) so far?

I should add, if you want a PET scan there are private centers which will do those for you including reading the results. It is not likely that insurance will pay unless ordered by a physician however they usually accept any form of payment such as cash, check, or credit card.
PET scan costs are often less than you would see at a hospital or clinic however they typically are more expensive than a CT or MRI because PET requires a radioactive cocktail for the image to show a result. The cocktail is the expensive part.
No doctor authorization is required. Some people have bi-annual PET scans just for their own piece of mind. An Internet search should yield results near you.

Hi in June 2024 I was diagnosed with base of tongue spread to 2 nodes cancer. I worked in a hospital for 30 years and saw what chemo and radiation did to people.
However when it came to staying alive I put my trust in my team of Dr's. I had 3 rounds of Chemo and to be honest it was not as bad as I thought it would be. I did have some side affects.
I also had 35 rounds of radiation and I am not going to pretend it was not fun. I am still recovering 4 months later.
That being said my scans all show cancer free. Hov cancers responds VERY well to this protocol. Please reconsider. It will save your life.

Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. The Good news is HPV 16 is a very treatable cancer. I am sure the earlier you start treatment the better. Trust me I had not visited a Doctor in 20 years and I found it hard to trust them but a good Oncology Doctor that treats alot of HPV cancer should be able to help guide you to the correct and proper care. I urge you not to keep waiting.
If this is any help here is my story....I am 58. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 18 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up. You got this. Trust in your Faith

I am not going to recommend anything else because I don’t know of a different route to take. I just came to say you have to do what’s best for YOU! It’s your life-if you don’t get treated the outcome will not be on your side. I’m praying for you to find the answers you seek before it’s too late.

I also had HPV+ tonsil cancer and was scared to death about the treatment but after much research and consultation ended up having 35 radiation sessions and 6 chemo (cisplatin). The treatment was challenging as you've heard by now but absolutely tolerable. I also had a feeding tube put in before any treatment started and was grateful that I did. Presently six months post treatment and loving life! Yes the first few months after treatment is not fun and I still have some side effects but overall I feel MUCH better and thank my team of doctors every day for saving my life. Not piling on just sharing my experience. I wish you all the best. BTW I'm a 64 year old male.

I had cancer on the base of the tongue and in a few lymph nodes. Like you, I was scared of the treatments. I was not a candidate for surgery, so I went with chemo and radiation. For years later, and my scans are still clear.

For me, I wanted treatment that had a long track record with data supporting its effectiveness. If the institutions that focus on head and neck cancer supported it, I was all in. If organizations like Mayo, MD Anderson, etc. didn't include it in their treatment options it wasn't for me.

You are the one with cancer so follow what your brain is telling you to do.

Good luck!

Can anyone give me guidance on any products or treatments to help with my husband's loss of saliva? He has had 19 proton radiation treatments inside his nose and sinus cavities. When he sleeps now, his tongue sticks to the roof of his mouth, and the rest of his throat is extremely dry. He is unable to sleep more than about 45 minutes at a time. I am fixing foods that he can easily eat, but nighttime is proving to be a challenge. Any help is appreciated.

During my Proton Treatment I had very dry mouth. The radiation certainly damages the saliva glands during treatment. If you want to pass on to your husband, I can say now 18 months out I am back to about 90% saliva production as well as taste buds. I used Biotène Dry Mouth Gentle Oral Rinse. Walgreens has a generic brand as well a little cheaper. I would take a swing going to bed. During the night and in the morning. It helped me some. I also ate a very creamy soft diet during treatment. It will get better. Tell him to hang in there.

@deb26 I'm six months post treatment and still have no saliva however I'm told it will come back to some degree. My mouth is always VERY dry. For sleeping I place two Xylimelts in my mouth before I go to bed and they definitely help. I find so many of the over the counter remedies do little or nothing however I know these work because if I forget to take them I wake up within an hour or so and am quickly reminded. Give them a try.