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

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Sue, Volunteer Mentor | @sepdvm | 1 day ago

In reply to @lizralpol "How do I tell people I work with that I have oral HPV symptoms suggestive of..." + (show)

@lizralpol I have always felt that being open and sharing information about my health with friends and family is the best way to go. People who want to offer advice and help are able to do so and you find your new support system. Are you hesitant about the HPV status? Then just share that you have an oral lesion suggestive of cancer. There are other causes of oral lesions like smoking, alcohol, radiation and more. If/when you are undergoing diagnostic procedures or treatment, I believe you will find coworkers who are very supportive and understanding, whether they have the entire picture or not. You get to decide how much to share.

William Olsen, Volunteer Mentor | @hrhwilliam | 1 day ago

In reply to @lizralpol "How do I tell people I work with that I have oral HPV symptoms suggestive of..." + (show)

Hi @lizralpol You don't have to give medical information to people you work with. You can say you are being looked at for possible oral cancer, which should just about cover all questions. Or you can tell them to mind their own business. People jump to conclusions however chances are, most people have some HPV within themselves and are completely unaware.
Get checked. Get a biopsy and take notes as to what type if any. Then if you have to take the cancer route, find someone well versed in head and neck cancer treatment, not just cancer treatment in general. We are here to help you on this path. Courage.

lizralpol | @lizralpol | 1 day ago

Thank you so much for advice. I am so embarrassed regarding the HPV diagnosis. Seeing specialist Monday.

William Olsen, Volunteer Mentor | @hrhwilliam | 22 hours ago

In reply to @lizralpol "Thank you so much for advice. I am so embarrassed regarding the HPV diagnosis. Seeing specialist..." + (show)

Just FYI, the HPV type, particularly 16 or 18 type appears to be the most successful with long term cure. In some cases it is being treated successfully with drugs alone or in place of radiation. I can never bring myself to say “It’s the good cancer” but, well, you get where I’m going here.