Does HPV cancer need its own designated support group?

@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?

@56tburd I was also 49 when this all started. I also consider myself fortunate.

My ENT doesn't seem to have a lot of answers to address side effects. My visits are typically a quick scope to be sure he sees no abnormalities. At this point that is doubtful. He will suggest things like Chest CT (secondary cancer check) and doppler of my carotids. Long term care is not their focus - not putting them down, just reality.

As far as side effects go (which is why I like this site) I typically get a nod that what I am experiencing can be a side effect, but little input as to solutions.

Regarding swallowing, I do exercises every day. I now find myself doing some whenever I have a slack moment......shower, driving in the car, while watching TV.

Best wishes to you. We are vintage! Without my 18 years, I wouldn't have seen my children grow up, marry and have their own children. I'm thankful for that and am sure you can run off a lit of personal experiences you've enjoyed in your time!

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/

I believe that most people will judge me if I tell them I have hpv cancer. I told my family and close friends but do not tell anyone else. I just say that I don’t know how I got cancer. It’s none of their business. I would certainly join the group. I had such a hard time with my jaw others could help me. I have osteoradionecrosis and had to have several surgeries to remove dead bone and finally had a flap surgery to cover my jaw with flesh from my leg and later on I still had more dead bone removed. I have been better since. The better I got the more I was able to eat properly and now I exceed my ideal weight by a few pounds for good measure. I’m not going to relapse without being able to combat weight loss! I’m what some would call stage 4 cancer as it had passed into my lymph nodes and lungs. I’m hoping it doesn’t come back in my lungs as I already have had surgery to remove nodules in each lung. There’s also a possibility that it could hit my liver. My tongue has healed nicely. That’s where a damn big inoperable tumor was located originally. Now after 10 rounds of chemo and 35 of radiation it’s been over three years. I just had my two year anniversary from the lung surgeries and now am No Evidence of Disease! Mayo really doesn’t want me to see my ENT surgeon anymore. Now I’m simply following up on my thyroid. They don’t even talk about my lungs! I only see the radiation people now and that very close to home which is nice that I don’t have the long drive to Rochester. Let’s start this group so we can help each other accept our new normal!

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.

@oliverpuppy Your body has a lot of parts that can get cancer. Lung, bone, kidney, throat, and so forth. I know of no one who has an HPV. I had cancer on the tonsil. It was Squamous Cell cancer. Was it caused by a virus, likely.
You did not have HPV cancer. You had cancer. You had mouth cancer or head cancer or jaw cancer. What caused it? Likely a virus as that seems to be a common denominator now. Which virus? The HPV virus that most of us have within us from time to time.
Personally I have never had someone ask about my cancer to that depth, at least not a friend.
We both had our jaw rebuilt due to osteoradionecrosis. Now that's an experience making each of us likely the only person in our respective towns to have such a thing. And the leg scar! It's great. Especially at the beach. "Stay away from sharks!" I am still thinking of a zipper pull tab tattoo at the top end of the 153 stitches. And I believe it is true, a scar makes a better story than a tattoo anyway. When I tilt my head back to expose my neck scar I can really send people off in the opposite direction. Fun stuff but at least I can eat normally again.
You had cancer. I had cancer. We have healed. We have damage. We are alive. Take that trip. Hug that stranger. Ride that bull. Okay, maybe not that last one. That's where we are. My best to you friend.

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.