1st radiotherapy session done today.....29 to go

I started the same treatment too today with a similar diagnosis. They couldn’t find my primary site either but seem to have settled with the left tonsil. You have been through a lot already, stay strong! 

Thanks Marwari, it's good to know other people are going through similar.  The Oncologist did say he wasn't completely ruling out the tonsil adenocarcinoma being the Primary but said he had never seen it before.....usually lymphoma or hpv so I'm just hoping it's the Primary! 

You stay strong too.  I've been putting it to the back of mind for.last couple of weeks but today it was real again!  

Hi Weejay and Marwari, I'd just like to wish you both good luck for your treatment, the next 6 weeks will go by very quickly, then you will be on the road to recovery. If you have anything that worries you along the way, just ask on here, someone will always help with an answer if they can. All the best to you both.

Regards Ray.

Good luck both of you. 
A day at a time and it’s soon done. 

CUP is not unknown of in H&N as initially many can be only a few mm across and difficult to spot on scans.  I know!  There is an "Unknown primary cancer" forum on here but it is quite inactive.  A few of us have the diagnosis on here and understand the added layer of uncertainty this puts into the treatment phase.  Stay with us during your treatment as there will be plenty of good advice on how to cope from those that have experienced it before.

Good luck Peter is the king of c u p in head and neck his is like the elusive pimpernel. Stay with us will help when we can 

Hazel xx

Wishing you so much luck and best wishes its going to get tough but you can do it. I finished chemo and 30  rounds  off radiotherapy in January this year and still have a odd bad day take care and be patience with yourself x

Hi

Same here. CUP diagnosis. Was told after panendoscopy they didn't think there was cancer (even though I had a lump in my neck and a small lesion in my throat), to then be told they had found the primary (I cried), to then be told sorry, the primary wasn't there after all. However, I have been told also that the primary can potentially burn itself out, or be so small as not to be found. It is an emotional concept to get your head around as your mind goes into ovedrive wondering. I am almost 2 years post neck dissection for SCC neck lump with 2 affected lymph nodes, no spread at PET scan Feb 2020. 30 RT sessions over 6 weeks and 2 Carboplatin ( had slight tinitus before diagnosis, hence the carboplatin not the cistoplatin). I am doing ok. You will have your days when negative thoughts take over, but in the main I am getting on with my life to the best of my ability. Being positive 100% of the time is hard work. Please don't beat yourself up, it is true rollercoaster. By the way, my cup is half full with white wine followed by GnTs !!!

Hiya, 

My primary was my tonsil, with spread to the lymph node.

I just want to wish you luck during treatment and to say the people here were a huge help to me so please ask anything.

Trev

Good luck with your treatment