Does HPV cancer need its own designated support group?

Additionally, if there were a support group for Head, Neck, and Throat cancer in my area, I wouldn't attend. I'm only comfortable talking with fellow HPV cancer survivors. We often suffer in silence, too ashamed to tell anyone close to us. Most often this Mayo Blog is the only place we can relate to other HPV cancer sufferers. And we're not all comfortable posting to others without HPV. Those who are searching on the blog reading and not posting due to being found out or exposed about their HPV, may just decide to give their story up if they felt safe enough to do so? It's a problem Bill and it should've been addressed long ago.

@praying4miracle I'm sorry, but I don't understand your question?

I've been meaning to bring up the stigma thing but didn't know
where to put it in the forum.
Also, the NavDx blood test for HPV+ has only been around for a few years now and should be a sticky of sorts so that people are aware of it. I'm grateful to have found it here in the head and neck forum but it was only by chance. It saved me from unnecessary treatments.
I was not offered this test by both oncologists and had to ask for it. It is an excellent tool to monitor progress so as to help avoid unnecessary toxic treatments.

I'm sorry that there is the appearance of stigmatization since we are all experiencing a life-threatening disease. As someone whose HNC cause was not determined, I have a concern that as these groups fragment, people will lose out on information addressing treatment of both the cancer and the side effects. It seems that due to the radiation treatment and the area of the body involved, we all experience similar effects, both short and long term. As it is, I don't have the inclination to follow every support group looking for answers when the resources here are quite extensive. Good luck with whatever you decide.

98% of the human population has the HPV virus. I understand there may be a stigma for some who now seek help with HPV related cancer such as some oral cancers and cervical cancers. I view people who smoke heavily and develop throat or lung cancer with a prejudice eye knowing that they knew better but didn’t alter their habits.
I don’t really see how forming a separate group will stop anyone from viewing comments about what is perceived to be an embarrassing situation. If anything it may be more stigmatizing. We all have the rights of HIPA. We have the right not to mention details or use our real names or face images here.
So are we looking for a group entitled HPV Related Head and Neck Cancer group?

@hrhwilliam Bill it's like categorizing Chicken Pox with Genital Herpes? Yes they are both viruses yet they are both very different.

I agree with @56tburd and @hrwilliam, I for one had 2 different head & neck cancers with the first one being HPV on the tonsil in 2008 and the second being non-HPV on my tongue in 2024 and its convenient to just have one support group to go to. In addition, the radiation from 2008 most likely caused the second one in addition to maybe even my third cancer which was on the skin.

Also, 90% of all oral cancers today are now HPV-related. You can get Human Papillomavirus (HPV) without penetrative sex. HPV is a skin-to-skin virus. While sexual contact is the most common way to contract the virus, it is not the only way. You can contract HPV in several ways without intercourse. About 85% of all people will get an HPV infection in their lifetime too. There are over 150 plus strains in the HPV (Human Papillomavirus) family and most of the body’s immune system typically eradicates the virus within two years 90% of the time and most strains of HPV go away permanently without treatment. Unfortunately, where it doesn’t, can cause health problems like head & neck cancer sometime down the road.

@roblem That's exactly why I put this out for discussion. If we agree to disagree that's fine. I understand all of the statistics. But, the odds of contracting HPV with non-sexual contact has not been clinically established. Technically possible, however extremely rare. So, approximately 99.8% of HPV is contracted sexually. It's mainly spreads through infected skin or the mucous membranes. Something I'm sure you're already aware.
Some people are cool with discussing their HPV cancer to everyone, and there are those who are not. I personally would not go in front of a church congregation or my Rotary group and share my experiences with HPV cancer. But, if I had lung or liver cancer, it may be acceptable. HPV cancer is different than most all other cancers and I think it deserves its own category. My opinion.

@harleytiger Going out on the proverbial limb, here.

What a person chooses to share about any health condition they have, is their own right and reward. How much information, causes, treatments, etc can be fashioned by an individual. If a person chooses to share their diagnosis, they can really go a long way to help dispel the myth and stigma that HPV is always caused by sexual contact, by educating others. Who wouldn't want to do that?!

One never knows who they might be helping when sharing good solid information.
Ginger
yes, I am someone with HPV

I agree!