Anyone had surgery (TORS) with no radiation or chemo after?

I had surgery in January and still no radiation. Going well so far. But every case is different so I would not want to say. I juet really trust my doctors.
But I hear reduced treatment is becoming the norm with P16 SCC if that's what you had. Congrats on the successful surgery.

In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and 3 infected lymph nodes. I had 35 rounds (7 weeks) of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery. Thankfully, cancer free in March of 2009.

Unfortunately, recently 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. 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 cancer treatments coming about especially for people who got it as a result of HPV. Here are some recent articles I found.

I had TORS surgery April 2023 to remove base of tongue tumor ( negative margins during surgery). The lymph nodes on one side of Neck were removed and sent off to Pathology. I was considered State 2/ minor Stage 3. I had 30 rounds of Proton Radiation June 2023 to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . Also I had NO Chemo. 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. Also, There are tons of Youtube videos on the subject. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Today 12 months out of radiation treatment. I can eat and drink about anything I wish. However, during Treatment I was eating very soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost,Shakes, soups, etc. A meal would take an hour. My taste buds were all but gone, I had mucositis with very low saliva production. Hair loss at the radiation site. Mouth Sores and Neck skin burns from treatment. Loss of stamina. Today one year later I would say I am about 90% back to normal on all. Head and Neck Radiation is a real tough deal. I would go for as little of radiation as possible as it is the gift that keeps on giving long after treatment. Is Proton Radiation an option for you? 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 much cheaper. Also, Proton facilities are far and few in between. In closing you are facing a very winnable battle but make no mistake it is a difficult journey. . I firmly believe if you have faith the Good Lord will get you through anything. Good luck to you.

Unfortunately I’m in Canada, so proton is not an option unlesss I pay to go to US. Thanks for your reply.

You are correct about not having a Proton beam facility in Canada. As I read it, the Canada health Act does allow for patients to be treated across the boarder. However, the number is rather low (2016 only 45 patients). Only seven provinces allow PBT referral so you need to check with the health authority and perhaps make your case with them. In addition, if you have the financial means, Mayo Clinic Rochester along with a few others charge the same rate for Proton as for Photon, which is a very nice thing. The actual cost to operate either is roughly the same but the Proton unit takes up a lot of real-estate in the building (3 floors I've been told) and the initial cost is a bit on the rich side.
Canada is still considering getting a unit and it looks like either in Alberta or Montreal, but I wouldn't hold out for it.
It wasn't an option when I went through it and I'm still around over twenty years later. Life is what it is. Courage.

Had HPV squamous cell cancer in lingual tonsil surgically removed in 2022. No radiation or chemo recommended at the time. Had a reoccurrence this year, another surgery. Radiation recommended, but I declined due to the host of side effects mentioned and my age (76). I will continue with quarterly evaluations, and if necessary, more surgery.

Hi @mark10 Welcome to the Head and Neck group. Any suggestion of meds such as Keytruda or similar? These show promise as an alternate to radiation.

No, but that is something I will research. Thanks!