Hi Muffy:
Welcome to the family. You found the right place as we have thousands of members who either have some form or oral cancer or are caregiver to one who does and they are a very supportive lot. Whether you need technical information, or just mental support, this is the right group.

Do one thing for me from the outset, first confirm that it is HPV-16 that you are positive for. You mentioned being HPV positive, but there are a LOT of different strains of HPV (like 200 strains if memory serves) and only 1 (I think) causes oral cancer. If yours is not -16 then your journey will likely be a different one than if it is.

As I understand it, you WANT yours to be HPV-16, as that form of cancer is much easier to treat with better outcomes than if it isn't. So, the fact that you have an STD isn't all so bad as you have a better chance of staying alive. I am HPV-16 positive too and in the beginning I went through pretty much all the same things you are going through right now; who gave it to me, was it my girlfriend, my ex-wift, who. Once you go through that phase of the journey you will realize it doesn't really matter who gave it to you ... you have it now ... so what do you need to do to move forward in a positive way with the rest of your life. From my discussions with several doctors and on this forum it does no good to confront your ex. He may not even know he has it, ie it may not have manifested it's presence yet in him. In fact, my docs told me to not discuss it with past people you have been involved with as you don't know who gave it to you or who you may have given it too. This may sound insensitive, but apparently 98% of the population gets HPV at some time in their life and like 96% of them clear it normally via their immune systems. We are just some of the lucky few that 1. got HPV-16 and 2. our immune systems didn't clear it normally. So, long story short, it accomplishes nothing to tell past lovers about it as even if they got it, they may have also cleared it already, or be part of the group that it never turns to cancer in. Now, don't you feel lucky to be part of such an exclusive group. (LOL).

I have to run right now, but will write more later.

Take care, start reading the forum and the website, you have a steep learning curve to negotiate before treatment begins, but we will be here for you every step of the way.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good