Does HPV cancer need its own designated support group?

I agree! Thanks

I agree

I think it would be beneficial . HPV cancers are on the rise and many
respond well to treatment , less treatment than administered through the standard of care protocol still being used.
Many current and future HPV cancer patients might benefit knowing that less treatments
are an option potentially preserving some quality of life after treatments end.
For example I wasn't aware of the NavDx blood test available now for HPV + until I just happened to see it mentioned in the head and neck group.
This blood test is a game changer which I had and was able to stop treatments ahead of schedule.
Putting HPV in its own support group would help minimize searching through other support groups which can be a challenge. I'm in. Great idea harleytiger.

Agree

I concur

I 100% agree. What do we need to do to getbit started?

A mutiny? As far as I see within this group, primarily most of the participants are HPV + SSC patients. This is your ship. The very few others with the rare tumor location or those patients who never had the HPV panel analysis performed make up a small minority of members to this group. And what about my peeps who undergo mandible resection due to radiation bone death or due to Ameloblastoma surgery? Ten of us do not a group make! Where will you seek advice if God forbid you find out years from treatment your mandible or similar has to be replaced because of the radiation you had, has killed the bone tissue.
I love all of you. Your help and advice is greatly needed in the Head and Neck group. A few others here have maladies that don’t quite fit the new normal. (HPV tests for the cancer connection began 25 years ago and became common only ten years ago).
Mutiny? To this day Pitcairn Island still doesn’t have internet access.

I should probably add: Changes to treatment of cancer do not happen quickly. Most medical professionals will continue to go with a treatment that works rather than trying something new. The reason? Liability.
While research continues, doctors are always reluctant to change from general consensus. Look at history. Look at how many years it took Dr Lister to convince the medical community that germs cause illness, that washing and cleaning was paramount to good health care.
And now we discover that our SSC is likely HPV related and therefore we can perhaps treat differently. Well guess what? I have believed that all cancers root cause is virus related for forty years and only now in this century has the medical community finally embraced that same idea.
When I had my cancer the test for HPV connection was just published by a group in Italy during my radiation treatment weeks. When we informed my oncologist of this we did not expect any change to treatment. And that large university medical group is just now after twenty-five years looking into other options. As much as we would like to change the world, the best we can hope for is to change our little corner.

No not a mutiny Bill. There is a stigma with HPV cancer due to it's being a sexually transmitted virus that other throat cancers do not have. That component makes our cancers more embarrassing (agree or not) and there may be an unwillingness to come forward. In other words, much harder to talk about. My best friend doesn't know about my HPV cancer and I'm not going to tell him because I'm embarrassed. There's a certain amount of public stigma about HPV and cancer. Us who have both get a double whammy. I've emailed Colleen several weeks ago and she thought it was a great idea, however I've seen no change or any update. So, I brought the idea to the group and hopefully there's some feedback?
Bill you may be just fine coming forward with your HPV diagnosis, but there are others who are not willing to share so easily due to the reasons I've mentioned. So, I'm not trying to be difficult, but in my opinion HPV should have its own title/category.

Hi HarleyTiger,
Tell me why ? Just interested in what I am missing. I am HPV positive so would like to know what I am not thinking about. I did have scare recently with growth on Anus. Obviously not head and neck, but these types of growth can be HPV associated so it put me in a tailspin. What else should I keep a look out for that may be relevant?