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HPV Tonsil Cancer...Are we the only ones in the room?
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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@harleytiger
I read every thought-provoking word of your sincere post. I am glad your wife is getting tested. HPV has become more rampant. No shame and blame in it. I know it's awkward to accept or chat about. But being here in this room to be acknowledged and accepted is more than enough. Keep strong man!
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3 ReactionsHi, 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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