Does HPV cancer need its own designated support group?

@hrhwilliam The 98% of the human pop having the virus is one thing, the reality 1.7% (1 in 60) of men develop throat cancer from it, and .07% (1 in 140) women develop throat cancer. I'm not talking about Cervical. So that sort of puts the 98% rate in reality.
Bill if ten or more people felt more comfortable with their story by knowing they're among like people, would it be worth it? I'm sorry that you are not able to see both sides of the coin?

@woodsy1
I agree

Thanks everyone for weighing in on this topic. I'm hearing 2 legitimate cases underlining arguements pro and con opening an HPV cancer-specific group.

HPV cancers encompass more than just head & neck cancers. HPV 16 and 18 high-risk strains cause nearly all cervical cancers and are responsible for some cancers of the oropharynx (throat/tonsils), anus, penis, vagina, and vulva.

Currently people with HPV-related cancers find support in the group related to where the cancer started. For this reason, I added this discussion to multiple groups:
- Cancer
- Colorectal Cancer
- Gynecological Cancer
- Head & Neck Cancer

Search results for HPV on Connect https://connect.mayoclinic.org/search/discussions/ show that people are finding support and connection based on the location of their HPV cancer.

There is a potential risk of diminishing connections by separating HPV-related discussions in its own group. There may be more benefit for someone preparing to start radiation for cervical cancer to connect with other women with cervical cancer to know what to expect. The radiation experience and resulting side effects are very different for someone with throat cancer.

My questions back to the group.
Think about joining Mayo Clinic Connect with a new diagnosis of HPV-related tonsil cancer.
1. Would you join the group with tonsil cancer discussions (Head & Neck Cancer) or HPV Cancer?

2. Would a member with with HPV cancer causing cervical cancer want to connect with someone with oropharynx cancer or with someone with anal cancer? What would the common experiences be?

Hi Colleen, thank you for commenting and being open minded. Personally, I think HPV Throat Cancer should have its own category. I realize radiation is radiation and chemo is chemo. It doesn't change. What's different about us is that a lot of us aren't heavy smokers or alcoholic drinkers, so we don't carry the risk factors others might for throat cancers. Thus, getting overlooked by our doctors due to lack of risk factors. I'm one of those who was overlooked by several doctors even though I told them. Then there is the taboo factor of HPV which is a hard pill to swallow along with the cancer diagnosis. Treating HPV evolving rapidly because of the high cure rates. I think giving it its own category will help people to come forward instead of backing away like I almost did?
When I first joined the Mayo Clinic blog I was searching for HPV Throat Cancer, I was not looking in Head and Neck Cancer. I had to search and search for specific area I was trying to find. Then I learned that HPV is lumped in with the Head, Neck, and Throat Cancer. Then I had to search that whole area to find my specific area. In my opinion that doesn't need to be so difficult. If I'm thinking this way then I can bet others are as well. Thank you.
Maybe something like this:
HPV Cancer 16 & 18
Sub Categorise:
Throat
Tongue
Cervical
Anal
Penis
Vaginal
Etc.

@harleytiger it does make me wonder if we are talking about stigma here, or in the real world. As William has pointed out, there is no need to reveal anything about oneself here other than what one wishes. Otherwise, we are all looking for answers to serious questions about treatments for cancer and side effects.

I too had trouble like Harley wading through all the different types and places of, and treatments for cancer that can occur in the head and neck support group.
Sub categories would be ideal I think in helping people more easily focus
on their specific type, location and treatment options for their cancer. Don't forget tonsil !
Not so sure how much effort and time something like that would take .

I have seen alot of famous actors, rock stars ,etc that have had throat cancer. However, Most keep the HPV part quiet but I suspect for many it played a major role. Michael Douglas was one exception. I suppose there is a stigma with it and risk to a career to advertise it. I choose to post about my HPV throat cancer to alert anyone that has a kid or grandkid under 25 to get the HPV vaccine. If only one person heeds my advice it was worth it to me. It will take awareness to let people know HPV-associated oropharyngeal cancers are on a rapid rise.

Hello tburd, I'm really not understanding the term "real world." So, I'll move past it.
The point I'm trying to make I feel is a good one. Whether everyone is in agreement is another story? Some people do not like change and I understand that. And I'm aware radiation and chemo treatments are just that.
My thought is that people who have been diagnosed with HPV Cancer are different and unique. Our cancers are a result from a sexually transmitted virus 16&18. Yes, it is very rare to contract the 16&18 non sexually, but it is still mostly sexually transmitted. That being said, I'm sure there are many people apprehensive of signing up and putting forth a question due to being concerned of the putting themselves out there. I know they don't have to use their real names, and I know they don't have to post their pics. But, nevertheless there's a fear. I think if they knew they were talking to people in their same shoes, maybe they'd be more brave and forthcoming? I have a 9" scar along the side of my neck that I'm not too proud of. It's a symbol of me doing things I shouldn't have been doing. My family doesn't know what the scar is from and my best friend doesn't know what it's from. You may have no problem with sharing with whoever. Not all people are the same and not all people are so understanding. This translates to the blog, I honestly believe there are many out there that want to ask questions but don't due to fear.
Second point, HPV Cancer patients on the Mayo Blog shouldn't have to search for HPV Cancer comments? Like myself when I first joined up. That goes for my wife as well when she first started searching for HPV cancer answers? I think there are enough of us out there now that we could fully benefit from our own category making it much easier on everyone. I don't expect you to agree, but I have enough agreement already that proves I'm not the only one wanting the change.

@woodsy1 Thank you Woodsy for understanding my points.

@harleytiger I could relate right away. And I am grateful for this forum no matter the outcome of this discussion.