HPV Tonsil Cancer: How do you manage the stigma?

I've told all of about 4 immediate family members and one very old friend of my tonsil cancer. None of my 6 siblings are aware of what I've been through in the last 8 months either.
My wife wanted to tell some of her family and I discouraged it due to the stigma attached
to HPV.
So yeah its been a little lonely at times but this forum has been a great outlet to talk about it unashamed .

Hi, I’m here in SE Iowa. I am 18 years out from stage 4 tonsil and base of tongue cancer. I was 49 when diagnosed. I have to admit I had the same thought you have right now. So I did some investigating on HPV. I found out, after looking at multiple web sites and medical sites my husband belongs to-he is a physician. The true medical facts are that by age 25, at the latest, we ALL have HPV virus in our bodies. Many of us are carriers by age 15. This virus kind of stays quiet and unnoticed throughout most of our lives. Same thing as herpes , maybe we get an occasional cold sore but that’s about it for most of us. In case your kids or spouses are interested there is an HPV vaccine now. Both my daughters in high school did get the vaccine, because they were scared after their mom was diagnosed. So I had chemo, cisplatin, which I don’t think doctors use anymore and 35 radiation treatments using targeted beam radiation. The surgeon was unable to get all of the bad tissue so my treatments must have been successful! I don’t think of HPV virus as anything that people consider un-clean. I would put it in category as common cold, my investigators make it sound as common as a simple cold. Something everyone contacts sooner or later. For me it has been an 18 year journey so far and over the years I have developed Lupus, an autoimmune disease which your body can’t control. Along with that came active herpes, again a virus that hides in your body like HPV. Due to radiation damage and the 18 years of damage accumulating the herpes have caused non-healing ulcers in my mouth. I also learned through a biopsy of mucus membranes in my mouth that the radiation damage has altered the DNA of the mucus membranes in my mouth. So for those of you that have non healing ulcers, burning tongue, along with difficulty swallowing you might want to have that checked out. There are drugs, acyclovir medications that can help a lot with the pain caused by herpes in your mouth, due to immune system not being strong enough to fight these viruses off.
Back to the HPV virus I would not be ashamed of having that as a cause of tonsil, tongue and throat area cancer. The patients with the HPV virus are the extremely lucky ones as those patients seem to have a better time living longer. I know I feel blessed to have been able to see both my beautiful daughter’s weddings. And I am blessed to have been here to here to help welcome my 3 beautiful grand babies. Yes certain days are better than others, and after being here for so long I feel privileged to have gone through almost everything discussed on this wonderful website. I am still here with my HPV and herpes virus and I can always find comfort on this website and us all helping each other through our lives together. Julie

@woodsy1 My older sister criticised me when I got tonsil cancer. Something I did or ate or lifestyle must have caused this. Not like her, older, wiser, eats healthy, exercises regular. She complained because maybe her insurance rates would increase now that there is cancer in the family. What a mess I have caused.
Then she got cancer, lady parts cancer. She said it wasn't fair, she did everything right. I am still waiting for an apology which likely will never come.
My point is we cannot control what other people think or feel about a situation. And maybe others just don't have a need to know. In this forum we can talk as friends who have gone through something most people would not really understand because "you don't get it until you get it". To family and friends at home, I only talk about this to those who really care or are genuinely interested. Most are not. Most don't think about me as much as I think they should. Ha Ha.
Good health and healing.

I get it , I completely understand . My Squamous Cell carcinoma showed up from sexual activities I had in the 1970s . I am now 77 years old and struggling to live through the side effects from 35 radiation treatments, for the past year.
Your right I as well keep the STD s mention from friends.
Also , I am now being treated for liver cancer because of drug injections back in the seventies also . Too young and too stupid . Strange that it shows up now after all these years .
Last week I went to Roswell to have radiation beads inserted into the tumor on my liver .
My wife is a God send ! We have been married 50 years this past May .

@woodsy1 My older sister criticised me when I got tonsil cancer. Something I did or ate or lifestyle must have caused this. Not like her, older, wiser, eats healthy, exercises regular. She complained because maybe her insurance rates would increase now that there is cancer in the family. What a mess I have caused.
Then she got cancer, lady parts cancer. She said it wasn't fair, she did everything right. I am still waiting for an apology which likely will never come.
My point is we cannot control what other people think or feel about a situation. And maybe others just don't have a need to know. In this forum we can talk as friends who have gone through something most people would not really understand because "you don't get it until you get it". To family and friends at home, I only talk about this to those who really care or are genuinely interested. Most are not. Most don't think about me as much as I think they should. Ha Ha.
Good health and healing.

@woodsy1 My older sister criticised me when I got tonsil cancer. Something I did or ate or lifestyle must have caused this. Not like her, older, wiser, eats healthy, exercises regular. She complained because maybe her insurance rates would increase now that there is cancer in the family. What a mess I have caused.
Then she got cancer, lady parts cancer. She said it wasn't fair, she did everything right. I am still waiting for an apology which likely will never come.
My point is we cannot control what other people think or feel about a situation. And maybe others just don't have a need to know. In this forum we can talk as friends who have gone through something most people would not really understand because "you don't get it until you get it". To family and friends at home, I only talk about this to those who really care or are genuinely interested. Most are not. Most don't think about me as much as I think they should. Ha Ha.
Good health and healing.