Hpv positive tonsil cancer

Posted by linda90 @linda90, Aug 16 12:50pm

I’m newly diagnosed stage 3 hpv positive tonsil cancer. I had a surgery to remove the tonsil and I’m going to start with my treatment radiation and chemotherapy in two weeks time. Is there any one with the information about how successful this treatment is

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Profile picture for sully19 @sully19

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.

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You didn’t have chemotherapy? Because they suggested 35 sessions of radiotherapy and one chemotherapy after the third week.

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Hi Linda,
In June 2024 I completed 35 rounds of radiation and 6 chemo for stage 3 HPV related tonsil cancer. The treatment was somewhat challenging as I'm sure you've gathered by now from others in this forum but definitely tolerable and more important survivable. As I've mentioned a few times since joining this group, one area where I differ from some others is I am a big proponent of having a feeding tube inserted. My team insisted and I'm grateful they did. It helped maintain my nutritional needs and now I have nothing but a very small scar to show for it. I had the "button" type which is smaller and very easy to use and maintain. Bottom line, a little more than a year post treatment I'm about 95% my old self enjoying life everyday. Best of luck, there is quality of life after this.

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Profile picture for roblem @roblem

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.

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Thank you for these links. This is exactly the treatment I am hoping for.

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I was diagnosed w hpv tonsil cancer that had metastasized to my lymph nodes 2 years ago in April -I had both tonsils removed and a right neck dissection- one lymph node was affected - 42 were removed,
For 2 years I have seen my oncologist every 3 moths — as of April I see them every 6 moths for 3 mote years w annual chest CT’s and 6 month blood tests. I was fortunate- no radiation
Still praying for continued positive Check ups
This post is hopefully positive reading for everyone going through this in their life— I am here and so far doing well heading into 3 years after my diagnosis and surgery at Mayo Clinic -
So — I thank God any my Mayo team for helping me to be able to post this

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