Has anyone had HPV+ TORS surgery without follow-up radiation?

Keep_the_Faith1

I was diagnosed with early stage HPV+ cancer on my right tonsil. After conferring with my surgery, chemo and radiation doctors it was recommended to have TORS surgery. The surgery went well, and fortunately the lymph nodes that were removed tested negative. But now the radiation doctor is recommending 5 weeks of "clean up" radiation because the margins were <3mm. However, my surgeon suggested that I did have a margin although <3mm, and blood work results showed no trace of HPV after surgery and that in my particular case, radiation treatment (which comes with permanent side effects) was a personal choice that could go either way.

Has anyone had TORS surgery without follow-up radiation? I am concerned about the side effects of radiation.

Keep_the_Faith1

Also, any thoughts that anyone has about this topic is appreciated.

wbcgaruss

Welcome Keep_the_Faith1, to the CSN Head and Neck discussion forum.

I have not had the TORS surgery.

But I would like to comment on having clear margins.

From the tissue taken out, they see no cancer cells left in the margin between the good tissue and the cancerous tissue. So that means the cancer is gone? Most likely but there is no way to tell for sure. There could be some cancer cells that were missed even with clear margins, that are still there and they can't be seen by the naked eye. These cells are of the size you need a microscope to see.

The idea of follow-up radiation and or follow-up radiation and chemo is used as a mop-up procedure to be sure that they get any errant cancer cells left there. Cells that can't be seen. With surgery and follow-up radiation, they are sure there is no cancer cells left. This is the way to get the best outcome.

You are correct, radiation treatment usually comes with permanent side effects though depending on the dose may not be very severe. Personally I think it is better to get rads up front and feel more sure all the cancer is gone rather than not get the rads and a year from now cancer shows back up again.

I believe reading on here over the years there have been those that opted out and were fine so it is a personal decision no one can make but you.

You could also get a second opinion and that may help quite a bit as more professional input is better.

In the end though if cancer shows again you are the one that bears it.

I know one thing about this cancer stuff you want to go in and do this one time and get it the first time, it is definitely something you don't want to revisit if at all possible. Especially with H&N cancer, each time you get surgery or radiation treatment the after-effects can accumulate and provide more risk of swallowing, speech problems, etc. This is a one-shot deal.

But this is a decision you and your care team need to make and be comfortable with, follow-up rads or not.

I have been seeing recently a thing called de-escalation treatment where they give a lighter treatment of rads I think.

Ask your care team about he descalation treatment and also if you don't get the rads see if they use the NavDx Blood teast to follow up with you on your post-treatment journey.

I did a quick search on this site and found a thread that may interest you…

HPV Related Tonsil Cancer - Surgery Only

https://csn.cancer.org/discussion/comment/1716397#Comment_1716397

Also here is the link to the search if you want to see all the threads it turned up…

https://csn.cancer.org/search?domain=all_content&query=HPV+%20TORS%20surgery%20without%20follow-up%20radiation&scope=site&source=community

Lastly here is a web page that explains it well and should be a big help to you.

Does Clear Margins Mean Cancer Free? What it Can Mean to You

https://mycancerresources.com/does-clear-margins-mean-cancer-free-what-it-can-mean-to-you/

I hope something here helps.

Our motto here is (NEGU) Never Ever Give Up

Wishing You The Very Best

Take Care, God Bless,

Russ

I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

Keep_the_Faith1

Thank you very much Russ,

Your response was very helpful.

I wish you the very best

Take care and God Bless you in your life and for all you do on this site,

Keep_the_Faith1

wbcgaruss

Thank you, Keep_the_Faith1.

Thanks for your well wishes and Blessings.

It is good to know that you found something useful.

Take Care, God Bless

Russ