Well first off I love this site and I'm so glad I found it about 10weeks ago when I finished rads. I wished I'd found it sooner. So here I am 10 weeks out from rads, 12 weeks out from Erbitux for SCC IV larynx HPV negative. I see my ENT on Friday and should get a schedule for my first PET post treatment.
Here's my concern and worries; I've had over the last 5 years 10 biopsies in the area due to Carcinoma in-situ.finally this last March I went in early for my yearly CT because while the scopes monthly had been clear for a while my voice continued to get worse even with more therapy. Well that CT showed the tumor deep in my larynx. Another large biopsy was done and after surgery the dr told me it was cancer this time and we would move on the chemo and rads. Of course my question to him was "how did this happen?" he told me he suspected that all of the in situ and now this tumor was caused by HPV since I've never smoked and I am a very rare drinker, very rare. However when the biopsy came back I tested negative for HPV and HPV16. Now not that I wish for HPV but I've heard that HPV responds very well to treatment so I was thinking it was better if I were positive. My doctor said I could still be positive even tho the biopsy showed not. Have any of you heard this? He also said it could be from all of the second hand smoke I grew up around.
Here's where I get worried, last night I started doing web searches (big mistake I know) on HPV and can it test negative but be positive. Well I couldn't find much on that but one thing led to another and I saw all these negative H&N cancer results. I didn't mean to read anything about H&N but it just happened. Now I'm scared for my upcoming PET and the fact that my HPV was negative. I am afraid the tumor is still going to be there. My dr wants to wait a full 3 months for the scan to avoid false positives so that makes me feel that if we see any hot spots it won't be good. Guess I just need to have a little pity party for a while and maybe I'll snap out of it.
So in the end what I wanted to know is:
Can HPV test negative but actually be positive?
Uh why did I allow myself to search? I never once did any searching when I first got diagnosed and never since then. Only last night, big mistake and the bad part is, I knew better ugh ugh ugh!!!