Every time I get a glimmer of hope it’s wiped away. I had my biopsy and got the flow cytometry results back first they were normal. I was still holding out hope the lump in my neck and swollen tonsil were benign. A few days later I was told they were metastatic cancer.
A couple days ago I saw the ENT for next steps, we scheduled a PET scan and rad-onc/hem-onc appts. She told me it’s very likely HPV associated tonsil cancer with lymph node spread, but that we could be cautiously optimistic.
I came here and saw a post from someone that said they had surgery and the doctors believed they got all the cancer and chemo and radiation might not even be necessary. I started to think maybe that could be me? Maybe things could be ok?
Then a few hours later I discovered what I think is a tumor on my jaw. It’s a hard lump on the inside part of the jaw under my right incisor, my cancer is in the right tonsil/lymph nodes. I can’t tell if it’s something that’s always been there and I’m only now noticing it, or if it’s something that’s grown over the past few weeks because my cancer is spreading fast and aggressively.
It ruined Christmas. I started panicking. I couldn’t speak. I went white as a sheet. I’m so scared. I’m so lost. I can’t believe this is happening to me. Why does this happen to anyone? I can’t wait 4 days for a pet scan and another week for results I’m going to drive myself insane even more than I already am. This month has been hell. And I know it’s going to get much worse. For me and my family. And my wife is suffering with me and my depression. She can’t say anything to make me feel better. And I can’t shake my fear and anxiety and be present. I can’t take much more of this.

Hello Balvertos,

Sorry for the ruined Christmas and panic you are experiencing while you await further testing results for the staging of your disease and next steps.

If things are truly this panic inducing for you, you may want to consider speaking with your primary care provider, tell them the level of your anxiety, as you have described here, and they might be able to give you a pX for some anti-anxiety type meds to help you be a little less on edge about things.

They also may be able to direct you to some other resources, some type of counseling or sounding board type professional.

Perhaps the hospital may have a Chaplain or some type of social worker as well, or you may find such support in your community.

Any of us could get killed in a car accident on the way to work or the grocery store.

The great unknown, is what it is, but siezing each day and enjoying what you have, instead of fearing what may be, seems to me like a good place to start.

If you are still able to taste things well, swallow easy enough, speak clearly etc...enjoy those things and try to be grateful.

I splurged on a big fat juicy steak before my scheduled general anesthesia very partial glossectomy, as I did not know exactly how much tongue the surgeon was going to need to take once he was in there, or how long it would be before I could eat solid foods again.

Fortunately for me probably 2 months later I could eat a tough steak even. Was going to make the best of what I had not knowing.

Anyway there is probably some professional social worker/psychology counselor/Clergy type person you may want to speak with in addition to your primary care doctor for medication for anxiety, once you tell them where you are are at with all this, they may have some recommendations too.

I definitely noticed all manner of things in my oral cavity that I had never noticed, once I became hyper vigilant with the cancer biopsy result.

Come to find out wherever your blood vessels (the larger ones) go, a nerve runs along side them, and there is a little notch in your jaw caused by your pulse in those vessels, and if you keep fidgeting with the notch, you'll irritate the nerve and develop a sore spot. LOL. I told my ONC ENT Surgeon about that and he kindly smiled, and explained all the physiology of that, and new exactly what I was talking about. Sure enough, I stopped probing the notch with my finger, and the "funny bone in my jaw" quit aching and being sore when I pressed it....

My surgeon is great, he never tires of the various things I've noticed. He'll examine them and reassures me.

The new leukoplakia and ridges we are just watching for now, and if things develop I can call and schedule for an earlier biopsy.

Things can always be ok, regardless of what bad final diagnosis you may or may not get.

Trying to get yourself in good positive mental attitude and a "I'm going to fight this, and live my best life now, regardless of come what may"...seizing each day...that is my hope for you and everyone else coming to grips with recent diagnosis like this. Trying not to mentally self defeat yourself, and multiplying your misery seem like good goals.

You may also want to ensure your wife finds a good support network for her as well, someone to talk to (or groups of different folks, family, friends, etc...)

Hang in there!

You got this Balvertos!