Is there a big disconnect from what I actually see vs. what the doctors keep saying?

blackswampboy said:

the cervical cancer PR machine

not sure that HPV-associated H&N cancer itself is all that new... but unfortunately attention to HPV-associated H&N cancer is new.

furthermore, attention to HPV-associated H&N cancer is being diverted by myopic views like those of the National Vice President of the American Cancer Society... don't get me started...oops, too late! ;-)

incredibly... in the year 2012, too many people still see HPV as the cause of warts and cervical cancer, end of story. but as we know, the number of cases of men with HPV throat cancer will surpass women with HPV cervical cancer by 2020.

<a href="http://csn.cancer.org/node/251427">does the ACS really get the HPV threat?</a>

sorry, end of soapbox rant.

Just want to toss out a bit of our experience and thoughts.  Seeing these posts, and forgive me for not giving credit where credit is due to those who have have posted similar thoughts, my opinion is there is a higher rate of lung mets people on here because we are seeking comfort, info, solace.  I DO hope there are more people out there living their lives and in the "highly curable" group.  That hasn't been the case for my husband and some others, but damned if we aren't fighting it! 

Lots of appreciation goes to those who post that have been NED for quite some time - you, and we, know who you are.  Thank you for the hope!

I have connected with someone (and perhaps some of you have too) who is a writer whose husband was diagnosed and was treated this year, and is starting a fb page and website trying to get the word out about HPV+ head and neck cancer.  If you are interested in anymore info, please pm me.  It certainly is not a private site and my gut tells me she is really going to get things going with this.  People need to know! (duh!)

My 22-year-old son just got the last of his series of Gardasil yesterday.  Hope it's not too late for him (he IS 22!) but my husband and I feel better that he has had this done.

Like blackswampboy, end of my soapbox rant

Happy new year to all!

Lynda

Laralyn said:

I know what you mean

I struggle with the same questions. I think we all do. The honest truth is that medical science is derivative and evidentiary--it is only built on what's observed so it can't really predict, especially with the quick advances of new therapies combined with the newer diseases like HPV. The very nature of medical data is that it's always at least a couple years old... and a couple years is a long time in cancer care.

I have some other thoughts I'll post in a separate thread because they're not directly relevant here... but I wanted to let you know that you're not alone in these concerns and the confusion. :-)

Seems that the multi-part seminar I viewed years ago with some leading H&N Drs in the world mentioned the apparent connection between some H&N Cs and later lung mets that develop, post-tx. I'm NPC, and it is one of those Cs. My Onco has ordered lung Xrays for me over the past year-plus, and I had made no mention of it to her, so I assume she is aware of this as a significant possibility. 

kcass