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

Sorry to hear about your back of the tongue cancer, I've also been diagnosed with this a month ago.

I'm still a bit behind of you as I've still to have my scans tomorrow and my biopsy is  next Friday but the anxiety of what is to come as you know is horrible.

My two daughters who are in their late 20's came back from holiday yesterday and telling them the bad news on their return was without doubt the worst day of my life, just thinking about it now makes me want to bubble, but I must be strong for them and my wife.

I do hope all goes well with your treatment and you are right when you say we have every reason to be hopeful.

Best wishes

Peter

Hi Peter, thanks for your note. I notice you write the worst day was telling your daughters and not the day you were diagnosed - I think this says a lot about you and your priorities, and means you have the world to fight for.
I can't imagine your anxiety, everyone has a different reality but I'm consistently being told this is a very curable disease. 
Good luck for your biopsy tomorrow, I assume it's a fine needle rather than general? Take care, Erica

PS day 7 treatment today, doing well

Hi Erica,

Thank you for your kind words, my forthcoming biopsy for some reason is under a general anaesthetic with a fine needle biopsy on either side of my neck, I've never been under before so this will be a new experience for me!

I've lumps now on both sides of my neck and also under my right armpit which adds to my already heightened anxiety, but hopefully the consultant will be able to tell me more at the biopsy, to be honest other than the initial phone consultation with a GP and then the 5 minutes I spent with the ENT doctor who diagnosed the cancer I've not really had much contact from anyone in the NHS to tell me what to expect, fortunately Hazel's excellent blog has given me an insight of what is to follow.

Glad the first 7 days of your treatment have passed without any issues, I'd imagine once a routine gets going it will soon pass, I know when my treatment starts I'll be counting the days until it ends.

Hope all goes well with the ongoing treatment.

Best wishes

Peter

Hi Everyone, sorry that it has been awhile that I have messaged. Hi Erica, welcome to our group u must be finished ur 2nd week of Radiotherapy, hope u are doing well. Hi Peter, hope biopsy and scan went ok for u.

Since I was last here, I got my PET Scan (2wks today). All went well. Got no results yet.  I was provisionally due to start therapy this week but it is now changed to next week.  The waiting .....

Chat soon

Mary

Hi Mary,

Good to hear from you, hope all is well with you and glad the scan is done and dusted, just the waiting which is without the worst part.

I had my biopsy today and it was very bad news, the consultant informed me that the cancer had spread to my neck lymph nodes and also further down my throat and if that was not bad enough he said I had lung cancer as well, which apparently is not connected to the throat cancer and is a separate pre existing cancer.

This news has knocked me for six as I had no symptoms for the lung cancer and if I'd not had the scan I'd never had known about it, I'd prepared myself for one cancer but not two!

I was hoping to send you a cheerful message Mary so my apologies  but as the consultant said I was very unlucky and normally throat cancer is very treatable, so please be positive as I'm sure all will be ok with you.

best wishes.

Peter

Hi Mary,

Good to hear from you, hope all is well with you and glad the scan is done and dusted, just the waiting which is without the worst part.

I had my biopsy today and it was very bad news, the consultant informed me that the cancer had spread to my neck lymph nodes and also further down my throat and if that was not bad enough he said I had lung cancer as well, which apparently is not connected to the throat cancer and is a separate pre existing cancer.

This news has knocked me for six as I had no symptoms for the lung cancer and if I'd not had the scan I'd never had known about it, I'd prepared myself for one cancer but not two!

I was hoping to send you a cheerful message Mary so my apologies  but as the consultant said I was very unlucky and normally throat cancer is very treatable, so please be positive as I'm sure all will be ok with you.

best wishes.

Peter

O Peter I'm so sorry to hear your news. I dont know what to say.  It must be so difficult to process this. Please let us know if we can be of any help to you. 

Chat soon

Mary

Thank you for your kind words Mary, I will keep you updated on my progress.

best wishes.

Peter

Today I had my MDT meeting with the consultant and she confirmed I have stage 4 back of the tongue cancer which has spread to the tissue surrounding my throat and both the lymph nodes.

It seems I have a combination of both the HPV virus types but they are waiting for the final biopsy to confirm this.

Apparently no lymph node removal or neck dissection will carried out unless the treatment fails to work.

I was informed it was treatable, but she recommended that I take a trial that would combine immunotherapy into my 6 week Chemo and radiotherapy course, so the combined side effects I would imagine will be quite uncomfortable to say the least, however if it works it will hopefully be worth all the discomfort, if anybody has a similar experience I would be keen to hear their stories.

My treatment starts in 4 weeks time (which is nearly 3 months since I was diagnosed).

The last 2 months of anxiety and worry have been very stressful for my wife and daughters but they have been strong for me and now that I know treatment will soon start I feel at last things are moving forward, I might even get a full night sleep tonight without waking up during the night in a sweat and panic attack!

Dentist on Friday for teeth removal then my radiotherapy mask preparation and peg fitting the week after.

Best wishes to you all.

Peter

You are stronger than you realise keep positive it's six weeks start eating plenty now

Thank you for your kind words, I'm eating plenty but my weight still keeps dropping, hopefully things will improve soon.

Hi Peter, Its alot to take in all at once and you probably prefer to start straight away. Get it over and out of the way. That was the way with me anyways......but time will come around sooner than you think. 

I am getting 5days of Radio. with one day of chemotherapy with Radio. The day I have chemo is very long tiring day. 

I have managed to maintain my weight this week which was great news. Hope to keep it the same next week.

Stay strong Peter. Take care.

Mary.

Hi Mary,

Good to hear from you and well done on keeping your weight stable that is good news long may it continue.

Glad to hear your treatment has started and on course, mine starts on the 8th November which seems ages away and will be the same as yours but with immunotherapy added on a weekly basis which i'm informed has some nasty side effects when combined with chemoradiotherapy, however it has been to be done and I will try my best to stay strong.

Hope all will go well with you Mary.

Best wishes.

Peter.