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

Dear Mark10
I just want to say on behalf of my husband that had he know more about the radiation to his neck, he would have declined it. It was devastating for him as he could hardly eat at all since then and it was over a year and a half ago. The cancer was gone.

But the cancer came back and he died last night in his bed in his home with family surrounding him. I’m sorry but I just have to say it as I’ve been writing on this site a little bit,

Good luck to all of you, and Godspeed.

Thank you for your note. I'm so very sorry for the passing of your husband, it must be heart wrenching. I have declined radiation twice and believe I will continue to do so, given the life changing situations like yours posted on this bulletin board. Hoping that someday it goes away and will rely on surgery as needed.
All the best to you and your family.

Hi @mikeswen and welcome to the head and neck cancer group. Your insight and experience with TORS is very welcome in this group as TORS is becoming more and more commonplace. I also chose Mayo over UW Madison and am very satisfied with the outcome of my mandible surgery, which was required due to osteoradionecrosis from all the wonderful radiation I had years prior.
When I went through cancer treatment years ago, TORS was still in it's infancy and going by several monickers, Da Vinci for one, a rather stupid name if you know Italian in my opinion. Anyway the process and machines have come a long way in a few short years and have proven far less invasive than previous surgical techniques.
Keep us updated on your progress either by jumping back on this discussion or starting one of your own. It really helps others. Good healing.

William, glad to hear it has been years since having cancer. I had cancer in my pyriform sinus 14 years ago and had radiation and had to eat through a feeding tube for 3 months but came out of it great and then 14 years later had this base of tongue cancer removed on 10/29/2024. I hope to be a two time survivor. The pathology on the tumor and lymph node dissection were negative so I hope my pet scan in February is negative…then I will feel all cancer was gotten. My only reason to post here was I was hoping to help other people going through this to be able to get some more information from people that have gone through it.

I had TORS surgery at Mayo Jacksonville on June 25 with both tonsils removed and neck dissections on both sides. I had one lymph node involved on the right side, and was diagnosed as Stage 1 (HPV) While the first ten days were pretty miserable, I only lost four pounds, and was back on my feet pretty quickly. Thank goodness no radiation was recommended. It took about four months to start feeling myself again. I was more fatigued and there was definite weakness and limited motion on the right trapezius. I ended up doing PT for about six weeks to improve the range of motion and have been doing a fair amount of exercise to get the strength back as well. I'm now at about 98% on both counts, so very relieved. So far all of the scans and blood marker tests have been negative and I go back for a 6 month follow-up next month. It was an amazing team that found this early (I saw ENT on an unrelated issue and she said "Let's go through a cancer checklist while you're here...") Other than ongoing neck numbness, which seems to be slowly getting better, I'm back to my old (78 years) self. Feeling lucky and very grateful!

I had HPV T1N0 tonsil cancer and had TORS surgery last month. Since I had no lymph node cancer and the margins seemed good, no follow up treatments are planned as of now. Of course, that could change, but so far so good.

My view is that my fight with cancer just started and that my goal is to be cancer free as I get tested every three months for the next couple years. I'm focusing on lifestyle factors that reduce cancer recurrence. If you are interested, check out anticancerlifestyle.org. It's a free program run by a non-profit, and is intended to complement conventional treatments.

Mayo Clinic is conducting a clinical trial in which surgical, HPV throat cancer patients who need follow up radiation receive a significantly de-escalated radiation regiment. The objective is to maintain cure rates while reducing long term radiation side effects. If you google "Dart 2.0 Clinical Trial" you can read about it. Only patients with relatively non-aggressive cancers are eligible, but you may want to look into that.

Best wishes!!!!