Decision time - Treatment Plan for HPV + Squamous Cell Carcinoma.

Grungekid64

Hi, I’m a 61 year old man in the UK with a 3 cm tumour in one of my lymph nodes on R/H side of neck. Biopsies confirm HPV+ (P16+) metastasis. Had both tonsils removed 3 weeks ago and other biopsies done during the surgery and all back clear. Surgeon said she could not see or feel anything abnormal. Also had MRI, CT and PET scan, all clear So primary not found. Have been offered chemo of 6 x weekly Cisplatin, but my oncologist also happy for me to not have it or stop it at any time, plus 30 fractions of radiotherapy. She talked me through the dose levels for all parts of my orophayrnx and neck - max 60 Gy, remainder getting approx 50 Gy. I’ve also been told I need to have 3 molar teeth out due to jaw damage caused by the radiation.

Have done lots of research as you do, and it seems a lot of oncologists are starting to believe this is being over treated and de-escalation should be an option. I discussed this with my (wonderful) oncologist to have chemo and radio just on R/H side of neck followed by active surveillance and she has said it is my choice and they will do that if I wish. I am in great health generally and my gut tells me the primary has gone, which the oncologist has conceded is a possibility. However, she said that if the primary is still active it may spread regionally to my lungs and / or brain and then it will become aggressive.
I need to let them know tomorrow so they can start planning. The lesser option means no radiation to my throat or mouth and the associated side effects and my salivary glands will remain in tact.

The flip side is if the primary still exists and spreads regionally, it would probably be a bad outcome.

Just wondering if anyone on here has faced a similar dilemma and chosen the lesser option, and what happened thereafter! Thanks everyone!

wbcgaruss

Hello, Grungekid64, and welcome to the CSN H&N discussion forum.

The main thing I would like to convey to you is, whatever route you take you want to do the surest bet to absolutely get rid of the cancer.

This is a one-shot deal as my radiation oncologist told me, you don't want to visit this again.

There is a lot going on in the head and neck area like eating, swallowing, breathing, taste, saliva, etc., and if it recurs and you need treatment again it makes these functions more compromised.

If you can chose the de-escalation route that is great but the #1 thing is talk to your oncologists and stress that you want the treatment option that best guarantees the eradication of the cancer.

You haven't had radiation yet but you need to have teeth removed and healed before the radiation starts is what I am guessing from your statement.

You are going to need to be meticulous about your mouth and dental care from here on out the rest of your life.

From what I gather the radiation you are getting is for the cancer in the lymph node it doesn't appear they are going to operate and take the lymph node out.

Had they considered surgically removing any lymph nodes?

Also this radiation and chemo is going to be a cleanup operation from the previous removal of your tonsils to finalize and kill any errant cancer cells left after the operation.

There can be cancer cells still there after your operation that they can't see down to the cellular level and the radiation and chemo kills off any remaining errant cancer cells.

And lastly let me say again you want to choose the plan that kills the cancer once and done for sure the first time, this is a situation where taking risks is not an option, you want a sure bet.

Our motto here is NEGU (Never Ever Give Up)

Wishing you the very best…

Take Care, God Bless

Russ

Also, I recommend when you get a chance check out the "SuperThread" at the top of the page on the home page of the Head and Neck Forum here. It is a gathering of information, links, videos, etc. to help those dealing with H&N cancer.

Grungekid64

Hi Russ,

Thank for your wonderful response! I had a final meeting with my oncologist earlier, and since I live in the UK and will be treated by our National Health Service, the guidelines currently do not allow reduction in dose, only all or nothing as it were.

Anyway, I have gone for the all in option, especially as my partner and son wanted me to do that as well.

It left me feeling a but deflated as I think what they are offering is a bit of a hangover from HPV negative cancers from twenty years ago, when they were more prevalent and associated with heavy smoking, and I think as more evidence builds the guidelines may change, but now the decision is made, I’m at peace with it. I’m looking forward to getting rid of the lump in my neck and focusing on recovery!

Thanks again!

Loghomeliver

Also be sure they are doing Nav Dx testing