Tonsil Cancer from HPV: Anyone else?

@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.

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.

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

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.

Thanks Sue. Whilst I know that, I am embarrassed with the stigma attached to HPV.

In my experience, people have been supportive and understanding and I’ve found it sincere. I was diagnosed last year with HPV tonsil cancer and have been fully transparent with work, friends and family and encountered only support.
That said, I found that when people first heard I was sick they were respectful and didn’t ask questions. It was up to me to share what I wanted and my feeling is that, if I’d been more private, they would have been respectful of that; they treaded lightly.
It’s up to you to share what you want or don’t want, and the vast majority of people will be supportive regardless.

I’m newly diagnosed stage 3 hpv positive tonsil cancer. I had a surgery to remove the tonsil and I’m going to start with my treatment radiation and chemotherapy in two weeks time. Is there any one with the information about how successful this treatment is

Hello . First off this a very winnable battle. In particular, if this is HPV +16. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good! Most important have Faith in the Lord and It really will put your mind to easy. I was diagnosed with Stage 4 HPV 16+cancer of Base of tongue and Neck March 2023.
If this is any help here is my story....I am 57. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Now the good news... As far as today two years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 95% . I will continue to have a throat scope and CT scan every 6 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in his system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You WILL make it and things in a year will be looking up. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. You got this!

Very high success rates for you!
As said above, google can take you down a rabbit hole!
You may find a 5 year survival rate but don’t fret!
Most of us stop seeing our oncology team after 5 years, therefore there are no more information being recorded for your cancer.
I’m nearly 9 years out from Stage IV so you got this Linda!
Jody

Thank you Jody for the words of encouragement. I really appreciate it. I was very depressed from the day I was diagnosed. Now I’m positive with that information