Stigma Around HPV Tonsil Cancer

Billie67 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?

stevenpepe 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.

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.

Hello,

I am new here; just diagnosed in March and wanted to say thanks to all of you who post your experiences here for those of us just beginning the journey. I have been told my cancer is HPV+ and go for my path results on Tuesday. 

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.

Yes!!! Couldn’t agree more

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!

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! 

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.

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.  

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