Hpv positive tonsil cancer

Hello . First off this a very winnable battle. In particular, if this is HPV +16. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good! Most important have Faith in the Lord and It really will put your mind to easy. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023.
If this is any help here is my story....I am 57. 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 chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. 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). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 95% . I will continue to have a throat scope and CT scan every 6 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in his system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You WILL make it and things in a year will be looking up. 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. You got this!

Very high success rates for you!
As said above, google can take you down a rabbit hole!
You may find a 5 year survival rate but don’t fret!
Most of us stop seeing our oncology team after 5 years, therefore there are no more information being recorded for your cancer.
I’m nearly 9 years out from Stage IV so you got this Linda!
Jody

Thank you Jody for the words of encouragement. I really appreciate it. I was very depressed from the day I was diagnosed. Now I’m positive with that information

Thank you Jones. I think I want to put my attention on how successful the treatment is instead of the side effects. I have small children and one is afraid to leave them behind. I need advices to stay positive for the treatment. Thank you so much for your support

Hi. I had Stage IV tonsil cancer in 2008. Both tonsils were removed, then 33 radiation and 6 chemo. I never learned if it was HPV or other caused, but I still here! The path will be challenging, but you can make it.

If you have a feeding tube, be sure to use it if/when needed to keep your calorie count and hydration level up.

Best wishes

Thank you very much for the words of encouragement.

But you didn’t experience any recurrence?

No recurrence. I do see my surgeon 1x per year, have annual chest CT and thyroid ultrasound.

Hi @linda90,

In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds (7 weeks) of Photon radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever. In addition, cancer free in March of 2009.

Unfortunately, I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

One thing I am finding out is this big de-escalation Head & Neck cancer treatments coming about especially for people who got it as a result of HPV. I attached some articles on it here. Thus, I would push for the Proton radiation as @jonesja mentioned in the prior comments so you could have a better quality of life afterwards with less of the side effects.

Good luck on your journey.

I was diagnosed in May, started radiation & cisplatin in July, completed 30 radiations over 6 weeks and 6 cisplatin treatments( I opted out of last week). Make sure they did a blood HPV test before starting treatment( Naveris) and following completion of treatment blood DNA should be undetectable which strongly supports curative therapy.