Tonsil Cancer from HPV

Posted by sapphire1158 @sapphire1158, Aug 13, 2023

I discovered I had a tumor on my right tonsil in April and it had moved to one lymph node - I had robotic surgery at mayo and had both tonsils removed - all pathology showed all cancer removed from tonsil after surgery -I had the affected Lymph node along w 40 other lymph nodes removed - thank goodness none of the other lymph nodes were positive for cancer.
I have had 2 blood tests since surgery for HPV both negative I will repeat in 2 months - have had another Ct all good— the 2nd PET scan showed something near surgery site— my surgeon said all ok - just inflammation- am worried about that -
I am not doing radiation or chemotherapy unless something changes-I keep reading that most people have radiation
Just wondering if others have had this w no radiation- one more question- my taste buds r really messed up my mouth is very dry - it’s only been a little over 4 months - just interested to hear other’s experiences- thank you

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sapphire1158 | @sapphire1158 | Mar 19, 2024

In reply to @hrhwilliam "It’s going to take a while to get used to the fact that everything most likely..." + (show)

The above is soooo true! I have a sinus infection and of course my mind goes to the worse place!
Your insights are very helpful.

blessed52 | @blessed52 | Dec 26, 2024

Question- when the navdx comes back at 0, does that mean no cancer or have you cleared hpv?

cmickelson15 | @cmickelson15 | Dec 27, 2024

In reply to @blessed52 "Question- when the navdx comes back at 0, does that mean no cancer or have you..." + (show)

Definitely talk to your doctor about the NavDx. My doctor described it as one piece of data that indicates the likelihood of cancer being present or returning. But it’s not, on its own, conclusive. And I think it is helpful to doctors to see changes in test results for a given patient through time so they can see how we are trending. Again, definitely talk to your doctor to try to understand this better than I do.

jonesja | @jonesja | Dec 27, 2024

In reply to @blessed52 "Question- when the navdx comes back at 0, does that mean no cancer or have you..." + (show)

Yes that is correct you have cleared HPV cancer but not necessarily the HPV virus. NavDx blood test result of 0 means that no tumor-tissue-modified HPV (TTMV) DNA was detected in your blood sample. This is a good sign, indicating that no evidence of HPV-driven cancer was found at the time of the blood draw. I expect this to become standard protocol in the future. As of now it is in the "testing phase" but I believe about 95% reliable. The standard CT scan and throat scope are used currently. I would think the NavDx would add another tool in the Doctors toolbox for surveillance. My first NavDx before TORS tongue surgery showed high positive. After the surgery and year after it has shown 0 or No evidence. I am not a Doctor but all above are my understanding of the test.

blessed52 | @blessed52 | Dec 27, 2024

Thank you so much!

blessed52 | @blessed52 | Dec 29, 2024

I had the same surgery performed on 11/2024. Right tonsillectomy and 42 lymph nodes removed. No chemo or radiation, just praying for positive results for all of us!