HPV Tonsil Cancer: How do you manage the stigma?

Posted by harleytiger @harleytiger, Nov 13, 2025

I don't know about the rest of you, but where I live, I feel I'm the only one with HPV Tonsil Cancer. I'm sure some of the rest of you know exactly what I mean. This might sound like a Pity Party, but it's the truth. No one goes around talking about having cancer caused from a STD and nor do you want to tell anyone. Not only do we have to deal with the cancer aspect of this horrible ordeal, we have the stigma of having a sexual transmitted disease to boot. My best friend doesn't know about my cancer and we are very close. I have kept my surgery and radiation from him because he's been with only his wife his whole life. HPV cancer is not something he has to ever worry about. I just don't have the guts to tell him, or any other family members. I have told some friends at the gym because they see my throat scar and my weight loss. Although my throat scar was very well done. I tell them it was tonsil cancer but I leave off the HPV. They're not stupid people and so who am I kidding? Cancer is lonely and bad enough without adding the HPV aspect. If I could only do things over? At 62, we weren't told about HPV and now it's too late. My wife is now going to see if she's HPV positive. That's going to be interesting.
There's no mental support for most of us with HPV Cancer in our local areas. I'm grateful that we are going to live and it was caught in time. And most HPV cancer responds well to treatment. As all of you know, this journey isn't easy and in the early stages it robs you of some the most cherished pleasures of life. I'll end by saying that HPV Tonsil Cancer is a very lonely "Cross" to bear. I hope my Pity Party wasn't too long, if so, I apologize.

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kamrin | @kamrin | Jul 23 7:41pm

Depends who you tell. Some I tell its HPV, some I dont. Either way its okay. And we are all here to support each other.

jennifish | @jennifish | Jul 25 5:07am

Well back in the day HPV was rampant, and we weren’t lucky enough to get vaccinated. When I first found out my husband said let’s not tell people it’s From HPV. I’m NO! I’m glad it’s HPV and not cigarette related! I tell people IM BLESSED it’s the HPV type because my chances of survival are much better, and I’m going to live. I say HPV directly causes tonsil cancer and cervical cancer and I’m also blessed it’s not in my hooha!! Do not be ashamed of where you came from or what you’ve done. Today you are an example of strength, a reminder to get kids and grandkids vaccinated, Raise your head high, you had a fun past 😉 I want to say I read somewhere that 70-80 percent of us had HPV and never knew it.
I don’t think of the cause, I try to be an example of strength, determination, hope, and what a fighter really looks like! If you can’t tell your friends that really love you, maybe you should consider what a
Real friend is. Real ones wouldn’t judge you for being human, battling a horrendous disease, or conquering it!!
I pray you find the ones you deserve to be surrounded with. You shouldn’t have to fight alone.

a92duck | @a92duck | Jul 28 11:40pm

This very concern was addressed by my medical oncologist before I even really realized it was a concern of mine. During my first/ informational meeting with my med onc, he explained that HPV is so common that it’s virtually impossible to become an adult and not have been exposed, it’s just that the majority of exposures clear on their own without any symptoms. Other STDs need some sort of rip or tear (such as what may occur from sex) to gain access to the body. He said that with HPV+ tonsil cancer, the tonsils are open and sponge-like, offering an easy way to get into the body.
I know I’m not doing a very good job trying to explain what was explained to me and I apologize for that. How he explained it to me and the fact that he did so before I had given any indication that it was something I was concerned about, made me feel much better. That being said, I do have to admit that I typically refer to having head & neck cancer rather than tonsil cancer solely because of the perception.
I guess, in summary, the fact that your cancer is linked to HPV should not make you feel “less than” in any way, shape, or form, but if you’re uncomfortable you can always just always describe it as head and neck cancer rather than tonsil cancer.

sc66 | @sc66 | 1 day ago

At 66...going thru this now, left tonsil, small part of back tongue and left and neck lymph nodes removed. Starting 7 weeks of radiation and light chemo on sept 28th. Has been challenging but i haven't hidden the hpv part of my cancer to my family or friends. I was pretty sexually active before by last marraige of 25 yrs, now divorced. I'm not trying to track back to how i got this, just wasted effort cuz the past is gone, so I'm just going 1 day at a time, Dr's say prognosis is good for 100% recovery in 6-9 mtgs so i am hopeful and praying for strength and guidance! Thx for sharing.

omaest | @omaest | 1 day ago

I had HPV cold sores before I ever had sex - the virus was already harboring. But that's not the only cause of tonsil cancer. No one knows how or why I got tonsil cancer so I don't let speculation bother me.

padik44 | @padik44 | 1 day ago

Most people I run into do not connect my tongue cancer with HPV. Don't tell, no stigma

sc66 | @sc66 | 21 hours ago

In reply to @mrsfootdoc "Hi, I’m here in SE Iowa. I am 18 years out from stage 4 tonsil and..." + (show)

@mrsfootdoc

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

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@mrsfootdoc I'm starting radiation and chemo now for 7 weeks - they will use Cisplatin...thank you for your helpful msg!

padik44 | @padik44 | 2 hours ago

In reply to @sc66 "@mrsfootdoc I'm starting radiation and chemo now for 7 weeks - they will use Cisplatin...thank you..." + (show)

@sc66
Last Sep-Oct I had 7 weeks/35 radiation & 6 Cisplantan. I had a trach. Late Oct. & Nov. we're very difficult losing 50 #. Back now. Trach reversed January. Exercise as much as you can to stimulate hunger & your body. Sleep, lots