Stigma Around HPV Tonsil Cancer
Comments
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The cemetaries are litteredBillie67 said:People are really really
People are really really stupid yet most of them think they know better than we do. I have one “friend” who said to me, “what would you think if I told you that you could have skipped all of that chemo and damaging radiation and still beat cancer?” UGH
She’s also the same one that told my that my Type 1 diabetic son (insulin dependant) son could forgo his insulin if he would only commit to an all raw diet!
Uummm, Type 1 diabetic, look it up lady!!!
The cemetaries are littered with foolish people who thought they could beat cancer by unconventional means. Who knew eating tree bark during a full moon in an even year could cure cancer?
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There is nothing worse thanTonita said:I had stage one SCC not HPV
I had stage one SCC not HPV but I smoked. There is a stigma with that too. My doctor said I brought it on myself. How's that?
There is nothing worse than people who think they know better and have all the answers. I can take it from a doctor but it's super annoying to hear it from people who never went through this.
The worst is having someone lecture you about diet and nutrition when you tell them you can't swallow or open your mouth. Then they still argue with you.0 -
isn't that the truth! I neverstevenpepe said:There is nothing worse than
There is nothing worse than people who think they know better and have all the answers. I can take it from a doctor but it's super annoying to hear it from people who never went through this.
The worst is having someone lecture you about diet and nutrition when you tell them you can't swallow or open your mouth. Then they still argue with you.isn't that the truth! I never minded the genuine concern and suggestions. It was the know it alls who know nothing at all TELLING me what was best for me. Yikes!! People make me nuts sometimes.
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My two oldest kids, 12 and 14
My two oldest kids, 12 and 14, got the HPV vaccine this year. They will get their second dose in October. Their dad’s cancer was HPV- but when we explained that HPV can cause the same thing, it was a no brainer for us and for them.
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It is now 19 months since
It is now 19 months since initial diagnosis, and chemo-brain and senility are clouding my memory of the start of it all, but I do remember thinking it was good when the biopsy came back positive for HPV. It sort of increased the stated odds from 'maybe' to 'pretty good probably'. My brain is now so rad toasted that it can't begin to consider what it would be like to go thru treatment thinking it might not work.
My ER doc kid sees the wholistic refuseniks periodically in the ER and ICU. It's why we all sign all those informed of diagnosis forms. It doesn't happen every day, but it does happen often enough. The doc informs on the condition and treatment path, gets the form signed, isn't much for debate, and moves on to those that want to live. Usually some form of pallative drug gets issued, which often times is the whole purpose of the visit, especially in late stage. ERs tends to be the dumping ground for other specialties who simply don't feel like dealing with it. Death holds no mystery for them, and they are pretty confident in their judgements. The odds are always in the doctors' favor. From what I can see it doesn't cause them to lose much sleep, it certainly doesn't keep the hospital from billing for the visit. Industrial efficiency for those that want treatment, otherwise America in particular is blessed with a pretty good Hospice network, at least in urban areas. Everybody is going to die of something eventually. I'm not so bold as to believe that stupidity won't yet be a factor in mine, but I'm pretty sure it is a factor for those treating cancer with garden greens. Still, I wouldn't hesitate if I had to do it all again. I have hung on to my mucusites suction pump.
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Stigma but...
When I got the diagnosis HPV+, my wife did not want to tell anyone I had cancer. We had our differences as I felt that if telling everyone I knew about HPV cancer and the vaccine available to youth, if just one person got the vaccine or avoided cancer then it was worth any stigma - rather it was a teaching moment.
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Thumbs up, Donfoo.donfoo said:Stigma but...
When I got the diagnosis HPV+, my wife did not want to tell anyone I had cancer. We had our differences as I felt that if telling everyone I knew about HPV cancer and the vaccine available to youth, if just one person got the vaccine or avoided cancer then it was worth any stigma - rather it was a teaching moment.
Thumbs up, Donfoo.
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Yes!!! Couldn’t agree moredonfoo said:Stigma but...
When I got the diagnosis HPV+, my wife did not want to tell anyone I had cancer. We had our differences as I felt that if telling everyone I knew about HPV cancer and the vaccine available to youth, if just one person got the vaccine or avoided cancer then it was worth any stigma - rather it was a teaching moment.
Yes!!! Couldn’t agree more
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HPV
There is a ton of controversy on HPV and not a lot of definitive info. I was HPV+ stage 4, 8 years ago. I chewed tobaco on and of for 20 years. The HPV thing.
Could have been with me since I was born from my mother when I was born or from anyone in between. My wife was checked and is neg. Its a virus so who knows.
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Rare Bird
I am one of those rare birds- never smoked or drank, HPV negative, never chewed betel quid, to my knowledge. (It's listed as a major cause of oral cancer in Asia.) In an ironic twist of fate, in one of the high school courses I taught, we covered STDs. I was shocked to be told I had base of tongue cancer. After being cancer free for 3 1/2 years, like many of you, I also feel compelled to encourage others to become educated about vaccinations and the warning signs of oral cancer. No one should have to go through what we've experienced!
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Stigma because...
I have been married 34+ years. I have been faithful. My "teens" were not spent engaging in risky behavior nor have I, at any time during my marriage, been unfaithful. My wife's and my first date was her 15th birthday. For religious reasons there were lots of years where we didn't have rhythm or anything else (if you get my drift).
My ENT often has a resident seeing patients with him. I tell every resident DO NOT jump to conclusions. I don't know where I picked-up this virus and neither does anyone else.
I traveled a lot. I ate more meals in restaurants than at home. I touched a lot of stuff AND smoked (putting my hands to my lips). There is NO WAY that I will ever know where this came from. A communal chalice? I drank after someone? A waiter's thumb in my soup? Who knows.
Stigma???? Greeeeeaaaat. There's something I'm not going to worry about.0 -
Thank you
Checking in on this website after quite some time...SPREAD THE WORD! My late husband (diagnosed HPV+ in February 2011 - RIP January 2013.) Was this sort of the beginning of understanding it all? He had throat problems for years and was treated for acid reflux. I am all about making sure the vaccinations happen - and it did, for our kids (mid to late 20s now.) I no longer have a problem letting people know, when they ask, that HPV was the source AND there is a good chance of prevention (yes, people were hearing HIV when you said HPV - even though HPV was/is much more likely!)
My husband died at 61 years of age five years ago - with children in their early 20s. I now have a dear friend I found through this website - interestingly because of an article posted - whose husband died of throat cancer not related to HPV. When they were relieved to hear it was not HPV related, the oncologist said that was "not necessarily a good thing."
Although out of the loop for so much of this now, PLEASE KEEP EDUCATING friends!
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My FIL is the same.MrsBD said:Rare Bird
I am one of those rare birds- never smoked or drank, HPV negative, never chewed betel quid, to my knowledge. (It's listed as a major cause of oral cancer in Asia.) In an ironic twist of fate, in one of the high school courses I taught, we covered STDs. I was shocked to be told I had base of tongue cancer. After being cancer free for 3 1/2 years, like many of you, I also feel compelled to encourage others to become educated about vaccinations and the warning signs of oral cancer. No one should have to go through what we've experienced!
My FIL is the same.
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The STD Stigma
I am meeting at the end of the week with the community outreach coordinator at the major hospital where I received treatment. I asked what I could do to help spread the word about HPV and its epidemic rise. I'll see what recommendations she makes and share any that might be relevant. I wouldn't wish what I've been through from the time I was diagnosed in January until today on anyone, especially if it is something that could avoided. Regretfully, the current vaccination may not be effective on oral HPV cancers. http://www.cancer.ca/en/research-horizons/a/6/f/can-the-hpv-vaccine-help-prevent-mouth-and-throat-cancer/
Working together, we can make a difference -- and it doesn't matter if this is a sexually transmitted disease. Remaining embarrassed and silent results in unnecessary pain, suffering and death. We need to get over it.
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Something you picked up maybe
Something you picked up maybe even decades ago. These days we can skip thoughts of having been a bad person.
I don't tell people it’s HPV and nobody knows about that anyway. And you and I know it it the “best” kind to have
according to the Ca doc.
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HPV tonsildebbiel0 said:I am also in my 60's and was
I am also in my 60's and was worried about how to tell my family and friends, especially my sons. At first I only mentioned SCC tonsil cancer. After I got over the numbness and reality set in, I realized I had a chance to possibly prevent this from happening to someone else. I started telling everyone, that wanted to listen, that my cancer was HPV16. There is a vaccine available for young people, that may help prevention. I have encouraged my friends, sisters, colleagues to tell there children, grandchildren, nieces and nephews to check in to it and have the conversation. You never know, I may have prevented my grandson from having to go down this nasty road.
AMEN! I do the same I am not ashamed about my past and/or activities. Those who might mention it
in a derogatory way are not worthy of my friendship. I am going to share with my DIL so she can
conaider having them take the vaccination.
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Anyone heard of the Kotsansis Institute
My boyfriend was diagnosed with tonsil cancer which the doctor said was HPV related. We were both surprised. He had immediate surgery from a doctor who gave us conflicting information about having removed all the Cancer (May 2017) and due to swallowing issues he went to a different doctor and is now preparing for radiation and chemo for 7 weeks straight. He has been doing research about finding ways to get through the treatment. We've learned that it's not the Cancer, but the treatment that may do the most harm.
Can anyone share their recovery experiences with me? And have you heard of this institute who suggests different methods of help for withstanding treatment?
I'm a full-time student at 56/ Social Work and need support as he does. The field I chose and my boyfriend's illness/ironic.
Cheryl
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Might.HoustonCareGiver said:Anyone heard of the Kotsansis Institute
My boyfriend was diagnosed with tonsil cancer which the doctor said was HPV related. We were both surprised. He had immediate surgery from a doctor who gave us conflicting information about having removed all the Cancer (May 2017) and due to swallowing issues he went to a different doctor and is now preparing for radiation and chemo for 7 weeks straight. He has been doing research about finding ways to get through the treatment. We've learned that it's not the Cancer, but the treatment that may do the most harm.
Can anyone share their recovery experiences with me? And have you heard of this institute who suggests different methods of help for withstanding treatment?
I'm a full-time student at 56/ Social Work and need support as he does. The field I chose and my boyfriend's illness/ironic.
Cheryl
Want to start a whole new threat, your posts will get lost on this one.
Quick answer, all you need, is in the superthread. Ask questions, everyone will answer
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