Hi Mary, I read your post with interest as I also have a rare situation with oropharynx (back of my tongue). I seem to be a little ahead of you, but it's hard to find people with this scenario. 
I had a lump in my neck and saw an ENT. I had my MRI and PET in Jun. I then had a fine needle biopsy on the neck lump which told the doctors I had cancer in the mouth somewhere due to the type of cells (SSC).  I had a general anaesthetic biopsy to look for the primary, which seemed be flagged (via PET) at the back of the tongue, however despite 20+ punch biopsies they couldn't find it. This is apparently rare. 
Then I had a neck dissection (do not google image this!) to remove my lymph nodes, where it was confirmed I was HPV+. It's also basaloid (aggressive) which is again rare. So I have a rare cancer, that they can't find which makes it rarer that's basaloid so even rarer!! I do not feel special!!!!!!
Now I'm on my fourth session of proton today (a type of radiotherapy) and feeling very alone (I had to travel for treatment and leave my husband and young children behind). The radiotherapy is just targeting where they think it's likely hiding. 
On the positive side, although we have these rare cancers, I've been told by multiple doctors that the prognosis is good - while it sucks it's happening to us all, we have every reason to be hopeful xx
Erica

Hi Erica. H p v driven cancers do respond extremely well to treatment. I can't lie the treatment is hard giid luck with proton beam presume you're at Manchester not allowed to say hospital name. Good luck I am 3 years post radiotherapy for tonsil cancer with several affected lymph node s now living my life to the max any help please ask 

Hazel.  Aka radioactiveraz my blog is www.radioactiveraz.wordpress.com it may help 

Hi Hazel, I'll read the blog, thanks!

I'm not in Manchester, I'm supposed to be treated in Reading but the machine is down so I'm in Cardiff for a few weeks. 
Day 7 of treatment so still a fair way to go!

Hi Hazel, I'll read the blog, thanks!

I'm not in Manchester, I'm supposed to be treated in Reading but the machine is down so I'm in Cardiff for a few weeks. 
Day 7 of treatment so still a fair way to go!