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Tonsil Cancer from HPV
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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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.
Question- when the navdx comes back at 0, does that mean no cancer or have you cleared hpv?
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.
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.
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3 ReactionsThank you so much!
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!
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4 ReactionsHi,
I have been scheduled for right tonsillectomy and exploration of the tongue and right side neck dissection. My diagnosis was HPV16 with lymph node metastases.
Originally SCCUP. They cannot find any tumors anywhere after multiple PET-CT scans. My question is regarding surgery and how you feel now? Not sure what to do myself.
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1 Reaction@trustinhim, I’m tagging @blessed52 to make sure they saw your questions.
I can imagine it is unsettling that they can’t find a tumor and you’ve been diagnosed with squamous cell carcinoma of an unknown primary (SCCUP). If there is no tumor, is surgery even an option? What treatment is being recommended?
Surgery scheduled for this week. Right tonsillectomy, base of tongue biopsy sectioning? (not sure of proper terminology). Right side neck dissection for removal of cancerous lymph nodes.
This all started with a visit to primary doctor for tender lymph node. There was no other symptoms before or currently. Still no primary. Surgery was recommended with hope of finding remnant of primary in right tonsil. If that is the case and margins are good there could be little or no radiation.
How do I tell people I work with that I have oral HPV symptoms suggestive of Ca
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