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

Posted by johnschaar @johnschaar, Jan 4, 2025

In June of 2024 I was diagnosed with HPV+ tonsil cancer. I have been doing an alternative approach but believe it is not working and can not find a doctor in my area that will work with me and order a second pet scan as I am not following THEIR protocal. It is all Chemo / radiation or nothing! Basically my wife is no support if I go with the traditional routine, and insists that what I am doing will work.
I am very nervous about chemo and radiation. What else my be available?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

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.

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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?

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