Does HPV cancer need its own designated support group?

Posted by harleytiger @harleytiger, 3 days ago

If Melanoma and Thyroid cancer has its own support groups, then HPV Cancer should have its group as well. I think the group should help decide if it's needed or not? I feel it is very much needed.

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

Colleen Young, Connect Director | @colleenyoung | 22 hours ago

Your suggestions for sub-categories within a group is a good one. The good news is that sub-groups is on the design road map for Mayo Clinic Connect. We are also in the process of improving the site Search to help people find the discussions relevant for them.

Currently people can connect with others with like experiences in the related support group, which will later become a sub-category: HPV-related head and neck cancers discussions will be a sub-category in the Head & Neck Cancer support group, the HPV anal cancer as a sub-category in the Colorectal Cancer support groups, HPV cervical cancer in the Gynecological Cancers support group, etc.

To find discussions related to your type of HPV cancer, please use the Search bar at the top of any page or the Search bar in a specific support group.

Here are active discussions groups you may wish to join:

- Looking to connect with people being treated for HPV Throat Cancer https://connect.mayoclinic.org/discussion/hpv-throat-cancer
- Tonsil Cancer from HPV: Anyone else?
https://connect.mayoclinic.org/discussion/tonsil-cancer-from-hpv/
- HPV Tonsil Cancer: How do you manage the stigma?https://connect.mayoclinic.org/discussion/hpv-tonsil-cancer-are-we-the-only-ones-in-the-room/
- New HPV-16 back of tongue cancer diagnosis and treatment to date https://connect.mayoclinic.org/discussion/new-hpv-16-back-of-tongue-cancer-diagnosis-and-treatment-to-date/

- Vaginal and anal cancer after HPV. Stage 2 https://connect.mayoclinic.org/discussion/vaginal-and-anal-cancer-after-hpv-stage-2/
- Just diagnosed with HPV cancer in the vaginal walls: Need support https://connect.mayoclinic.org/discussion/just-found-out-that-i-have-cancer-in-the-vaginal-walls-from-hpv-has-a/

jcl2018 | @jcl2018 | 12 hours ago

I was diagnosed and treated in 2008. The SCC was in my tonsil. At the time, I didn't know to ask the cause and didn't care. I had surgery, 6 chemo and 33 radiation treatments. I have no idea if there are other long term survivors like me.

As my side effects continued to "kick in", in addition to annual visits to the hospitaI, Drs., etc., I searched the web for places to benchmark. Primarily because long term survivorship wasn't something on the Drs. priority list and studies about survivorship seems to lack.

This site has let me do that benchmarking and explore possible treatments. I/we still must evaluate what we learn as we are all different with respect to lifestyle, physical fitness, secondary medical conditions, etc. .

If the site is being "reconfigured", perhaps many would find a long-term survivor subcategory to be beneficial.

woodsy1 | @woodsy1 | 10 hours ago

Thanks so much for putting these subcategories together Colleen and anyone else behind the curtain helping with it !!!
It seems when a person is diagnosed with cancer there isn't much time to do research before treatments begin so these new categories will be very helpful in expediting that process as well as bringing together the people with similar situations in one place on the forum.

56tburd | @56tburd | 8 hours ago

In reply to @harleytiger "Hello tburd, I'm really not understanding the term "real world." So, I'll move past it. The..." + (show)

@harleytiger

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.

Jump to this post

@harleytiger sorry about the confusion. I merely meant that I understand people being hesitant to put it all out there, face to face, whereas you can keep your anonymity in this virtual space. I understand your point, and it appears many others agree. When HPV was first determined to be a cause, I took offense at the notion that I had done something illicit, insinuating that I deserved the outcome. I would not have likely shared that information. Twenty years has given me enough time to reflect on what is important, so I am less concerned about others' opinions. Not everyone will be of the same mind. That said, I worry that as the groups divide, getting information to everyone concerning treatments for both the cancer and aftereffects will become more fragmented. Maybe the monitors have some suggestions on how this can be avoided.

56tburd | @56tburd | 8 hours ago

In reply to @jcl2018 "I was diagnosed and treated in 2008. The SCC was in my tonsil. At the time,..." + (show)

@jcl2018, 2006 here. It's been a long and arduous journey, but I'm still kicking. Who would have guessed that one can still see changes occurring after 20 years. I quit going to the ENT years ago, as studies in UK demonstrated it did little to change the outcome after 5 years. I'll be going back for answers as to what can be done about the swallowing difficulties I'm experiencing these days. I see treatments have improved greatly over time, and perhaps I can take advantage of some of them to give me a bit of relief. What I have found since I've been involved with Mayo's support groups is that I've been very fortunate in my journey. It may have something to do with being 49 when it all began. Who knows?

Sue, Volunteer Mentor | @sepdvm | 8 hours ago

@harleytiger and all the other HPV related folks. I find there are excellent discussions on this forum about the stigma of HPV and some are very helpful in explaining the prevalence of HPV and various causes other than sexual contact. My son in law is currently battling HPV associated throat cancer and is one of the unlucky percentage that is not responding to radiation/chemo well. Where are the patients who have an atypical cancer going to find and share information? Let's keep the benefits of this forum and its widespread coverage of feeding tubes, tracheostomies, long term radiation side effects, dry mouth, swallowing issues, etc all together where it is easiest for patients to find information.

harleytiger | @harleytiger | 6 hours ago

In reply to @colleenyoung "Your suggestions for sub-categories within a group is a good one. The good news is that..." + (show)

@colleenyoung Thank you Colleen you're the best.

harleytiger | @harleytiger | 6 hours ago

In reply to @jcl2018 "I was diagnosed and treated in 2008. The SCC was in my tonsil. At the time,..." + (show)

@jcl2018 Good point!

Colleen Young, Connect Director | @colleenyoung | 6 hours ago

In reply to @jcl2018 "I was diagnosed and treated in 2008. The SCC was in my tonsil. At the time,..." + (show)

@jcl2018, good idea.

I'll take this opportunity to remind everyone that the group search is a great way to find discussions related to your questions, your experience, and where you'd like to give support on any topic or point in the jourvey with your type of cancer.

Here's how.

1. Go to the relevant support group. For example Head & Neck Cancer https://connect.mayoclinic.org/group/head-neck-cancer/
2. Enter a keyword in the Search bar. For example: Mucus
3. See All search results and sort by Discussions.
https://connect.mayoclinic.org/group/head-neck-cancer/
Any topic related to survivorship can be found this way. For returning members, this is also a good way to find discussions where you can offer support to others. 🙂

woodsy1 | @woodsy1 | 4 hours ago

In reply to @colleenyoung "@jcl2018, good idea. I'll take this opportunity to remind everyone that the group search is a..." + (show)

@colleenyoung
Maybe its just me but I have never used the search function here.
Wonder how many other people haven't thought to use it , if any ?
Its does seem to work though.
Alot of us old folks aren't too tech savvy anyway. Some of the new old people may need to be reminded to use the search function .

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