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.

Hi. My name is Mickey. I was diagnosed yesterday with neck cancer. It is in my jugular gland and they say that it has invaded my lymph nodes. I haven't had my PET scan yet to see if it's traveled anywhere else. I'm a 50 yo male who is not emotional. But, now I'm a fury of emotion. Mostly sadness. How do I deal with the emotion.

Hi Mickey @bankit3 and welcome to the head and neck cancer group. Those are probably words you never in your life imagined you would read nor would anyone wish to. But here we are, in defense of your life, something totally unexpected. A famous person (my wife) often says "Life is what happens when you are making other plans." Here you are, making other plans and now faced with a cancer in your neck.
As Churchill often said, "Courage!" Myself and others who will respond to you and your concerns have all been through this. Most of us have made it through successfully. I won't fool you, this is a difficult battle and a few don't survive. To quote the late Robert Schuller, "Tough times never last, but tough people do." Let's concentrate on fighting this and winning, because that is the only choice that matters.
Your life is going to change, both in the near term as you put everything else on hold whilst you fight this cancer and in the long run when you will be stronger having conquered this and perhaps seeing the beauty of life as others never experience.
How do you deal with the emotion of all this? I guess you just come to grips with what has to be done, what is important to you, and above all, take it one day at a time. I went through this shortly after 9/11. My mantra was "At least you are not under the rubble." I was 47 with an 11 year old at home. And now here we are, you and I.
Take notes with the doctor visits. Find out the specific type of cancer and the treatment options. Make certain the oncologist treating you has significant experience with neck cancer treatment because the neck is far more complex than an arm or leg or lung for that matter. Get the best care you can get, even if you have to temporarily relocate to another area for it.
There have been so very many advances to cancer treatment over that past twenty years. Radiotherapy has offered up Proton Beam as opposed to the traditional Photon radiation. Although not as commonplace as Photon because of the size of the machine and it's initial costs, Proton is far more precise which lessons the damage to surrounding tissues and in my opinion, should be the only option for head and neck cancer treatment if radiation is in the protocol.
Drugs have also advanced amazingly for example Keytruda, which is found to be effective with so many cancers far beyond its original design intention. (Note: I am not advocating any specific drug here nor am I a qualified physician).
Surgery now offers less invasive robotic type work with faster recovery and better precision.
As you walk this path, there are people here, patients both current and former who have gone through similar of what you are facing. Please don't hesitate to reach out. I have your back Mickey. Share what you are comfortable with and we will get through this. When you turn 52 we can look back on this and say "Wow!"
Courage.