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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Jun 20 2:53pm | Replies (587)Comment receiving replies
Hi Everyone,
My name is Jay and I have been facing possible HPV+ OPSCC. I have had ultrasound, CT scan with contrast and a Fine Needle Biopsy with no cancer detected yet. I have asymmetrical tonsils, and a very large cystic lymph node at C2. My ENT (who by happenstance is also a surgical oncologist, trained for TORS) is treating this as if I have HPV+ just at a very early stage. I am scheduled for a modified radical neck dissection on July 1, and after I recover a PET scan and then likely TORS. My ENT feels strongly that this is very early and quite possibly could be treated with just surgery.
Needless to say I am little worried. I have to have the neck dissection and cancer found before the insurance will cover the PET scan. I would much rather be facing a single surgery for everything but I am trying to stay positive that mine seems to be very early.
Replies to "Hi Everyone, My name is Jay and I have been facing possible HPV+ OPSCC. I have..."
Hi @bentleyoakguy,
Three things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds.
One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record every appointment with every person I was in contact with so I could always go back and play so nothing is missed. Never had any of my doctors or others which I have seen many over the years not allow it and some actually were glad so important information is not missed. I have done this in 2008 with my first tonsil cancer caused from HPV and more recently this year 2024 for my tongue cancer which was most likely caused from my radiation treatment in 08’.
Two, go to a cancer center and if possible one that specializes in head & neck.
Three, get a second opinion.
Best of luck with the journey and hope this helps ease some of the frustration.
Jay I second what William said and get a second opinion. My case was similar to yours. No cancer detected with needle biopsy by ENT. MRI was also inconclusive. Then when the ENT did surgery to remove what was thought to be a benign cyst and got eyes on it, he knew by looking at it that it was cancer and pathology confirmed. I was immediately referred to a cancer center and off to the races with PET, neck dissection and TORS followed by chemo and radiation because the original lymph node showed the cancer may have extended outside of it. On one hand it is great that it may have been caught very early but neck dissection and TORS is no joke so please get a second opinion from a cancer center if you can. My ENT was great but my surgeon was better - he actually pioneered robotic surgery for head and neck cancer - and my ENT sent me to him.
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Hi Jay @bentleyoakguy and welcome to our head and neck group.
Your ENT is also a surgical oncologist and wants to cut you open. Have you heard the term "digging for gold?" How convenient, for him/her. For you? well, that's where we are. I for one would seek a second opinion elsewhere without help from your current health care group. At the very least, there are private cancer screening companies who often run PET or similar sans for cash or credit card. It may be worth a call.
A CT scan usually is accurate in detecting a tumor. It certainly was for me when all else failed.
I'm not a doctor, just a patient. But I have learned one thing over the years, take your healthcare into your own hands. If this all goes sideways with your current team, they will just shrug shoulders and move on. You on the other hand may be out $ or worse, a proper diagnosis. If it's not sitting right with you, as I suspect is the situation, hop on a different bus.