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!

I had tors and a neck dissection on 10/29/24. I was in the hospital for two days and then stayed in the hotel for over 14 days as my surgeon, Dr. Van Abel suggested I stay in the area in case of bleeding. Dr. Van Abel does the work of the Lord. I really feel I was sent to her from up above. Many people consider their sports idols heroes, but none of us have ever needed a sports figure, but many of us need a hero like her. I am six weeks now past my surgery and I am eating and swallowing at probably 98% before. my left shoulder is weak, as they mentioned as a possible problem with the neck dissection, when I open my mouth, my lower left lip doesn’t seem to go down far enough and when I eat, I need to pull it down or move to the right side, otherwise I’ll bite my lip. My neck is numb from my jaw down to where the incision was made also. My hope is most of these things will go away overtime. After my surgery, the pathology on my lymph nodes and the tumor were negative (no chemo or radiation was needed) , but I have a PET scan in another two months and I’m hoping that is negative and then maybe I’m out of the woods. If you are having this surgery, it will be rough the first couple weeks as far as eating. Amazingly though I never took any pain medication after I left the hospital in two days. I thought the pain where the tumor was cut out would be much worse than what it was. My tumor was at the base of my tongue. everybody, and I mean, everybody was so amazing here at the Mayo Clinic. I am so lucky I ended up here as I was referred to Madison Wisconsin by my oncologist first and they told me there they wouldn’t even do tors on me. They told me they were going to cut my neck open and access to to her that way, but I was to wait a week for their tumor board decision and then they wanted to use radiation. This was certainly not the correct decision for me.

I had TORS surgery April 2023 to remove base of tongue tumor ( negative margins during surgery). Neck dissection as well. The lymph nodes on one side of Neck were removed and sent off to Pathology. 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. I had very numb jawline and neck as well. I also had lip issue on one side where I would pull down some to eat. The good news is now the lip issue has gone ahead as nerves start to heal. My jaw numbness is about 75% better today. I understand depending on what neck nerves were cut or damaged it could affect shoulder raising arm movement. Fournately , I didnt have that issue and I cannot speak about that or healing time. l am stunned you can swallow at this early stage so well. That is awesome. I am sure your upcoming PET scan will not show anything negative. Yes I truly believe these Doctors are doing the Lords work. Merry Christmas to you.