Meet others living with Head & Neck Cancer: Introduce yourself

Hi,My name is Jim I live in Atlanta GA. back at the beginning of the year i found a lump in my neck. after visiting several drs. i ended up at Emory in Atlanta. I was scheduled for surgery on 4/2/2024. after about a month i was set up with my proton radiation schedule 5 days a week for 5 weeks total of 25 treatments. At the beginning it didnt seem so bad till about 4 weeks in thats when the burn started. but i was so close to finishing i just powered through. now I am 6 weeks out and it seems worse now than it was while in the last days of treatment. Now my biggest complaint is a stabbing extremely painful attack to my right side tongue. Same side as the radiation. It lasts only a few seconds but no warning it coming just Bam !1 then gone. This just started last week. Cant sleep as soon as it hits im up. I would compare it to an exposed tooth nerve when hit with cold air...another issue is the surgeon turned a sub mandibular
gland sideways to cover the hole where the tonsil was. It doesnt really drain well and gets very tight I also have a Thera Byte which i am at the full extension point without teeth i cant go much further i try stretching on my own which is not helping i explain all this to the dr and all i get is it will take time while i am looking for specific answers but no one seems to have them....

Hi. My diagnosis for tonsil cancer is as follows: P16 positive cT1N1M0 at this point.

I just finished chemoradiation last week and feel pretty rough. These days I have a lot of anxiety about what the docs are telling me vs. what I read on google about survival. My medical oncologist says that my cancer is HPV related, but I don’t think that the tumor tested positive for hpv, so I am a little confused.

I would appreciate any input from anyone who is going or has gone through this…

Ian

Hi @ijones98280 Welcome to the head and neck cancer group. HPV related or 16P as it is known seems to respond well to treatment with little repeatability. It can sure feel like the end of the world sometimes, especially right after radiation treatments where we typically continue downhill for a couple of weeks before we finally see daylight. And even at that, it takes months/years to get up to a new normal level.
Dr. Google is simply the last place to go unless you know the web sites you are looking at are reputable. Most of the actual medical sites such as Johns-Hopkins, Cleveland Clinic, Mayo Clinic, MD Anderson, etc will give you the best information.
Read some of the posts from this group tracing people back a year or two to see how they handled recovery. If you have questions, start a discussion or glom on to someone else's post and you should get responses from many of us who check these pages regularly. We are or were actual patients so our experience can be helpful.
Good luck. Courage.

Does anyone understand what exactly P16 + means?
I am struggling to understand my diagnosis.
Thank you in advance for any thoughts…

@ijones98280, here's an excerpt from the American Cancer Society about the significance of finding out if a tumor is P16 positive or not

HPV (p16) testing https://www.cancer.org/cancer/types/oral-cavity-and-oropharyngeal-cancer/detection-diagnosis-staging/how-diagnosed.html
"For cancers of the throat, the biopsy samples are often tested (for the p16 protein) to see if HPV infection is present. This is a key part of staging (finding out if and how much the cancer has spread) and is considered when making treatment decisions for oropharyngeal cancer. This information can also help the doctor predict the probable course of the cancer, because people whose cancers are linked to HPV tend to do better than those whose cancers are not."

Here are a couple of related discussion where you can connect with other members with a similar diagnosis:
- Standard Procedure for Stage 1 OPSCC P16+?
https://connect.mayoclinic.org/discussion/standard-procedure-for-stage-1-opscc-p16/
- HPV P16 positive cancer
https://connect.mayoclinic.org/discussion/hpv-p16-positive-cancer/
See all https://connect.mayoclinic.org/group/head-neck-cancer/?search=p16&index=discussions

What is the next step for you?

A immunohistochemistry test is used to determine if the the cancer cells are HPV positive and specifically what sub type of HPV virus. Typically if the cell smears are positive on panel 16, this is what they are looking for. A small percentage show up on panel 18 so this is known as HPV positive P(panel)18+. The + means positive as well. We could say a patient will have HPV positive panel 16 positive, panel 18 negative type but then we could also say panels 1 through 32 are also negative with the exception of panel 16. It's simple to just say P16+. The "P" means panel. The + means positive. So it's not really a mystery but is somewhat a code that lets others know the specifics of the cancer for treatment. The treatments for p16 and p18 are different. This was all explained to me by an oncologist.

I completed radiation and chemo about 3 weeks ago and am recovering. Still have some mouth and throat pain. Plenty of fatigue, but it seems to get a little better each day.

@ijones98280.
For additional info. there are over 150 plus strains in the HPV (Human Papillomavirus) family and most of the body's immune system typically eradicates the virus within two years 90% of the time and most strains of HPV go away permanently without treatment. Unfortunately, where it doesn't, can cause health problems like cancer sometime down the road. Age is a risk factor for oropharyngeal cancer. It’s more common in older adults because it takes years to develop.

Also, 90% of all oral cancers today are now HPV-related and mostly are made up of men. Of all those HPV strains there are a few that cause cancer such as, HPV 16 & 18 are most commonly associated with development of cancer. The HPV 16 strain is strongly associated with throat cancer.