No diagnosis as yet....about to have tonsils removed

Hi bex cancer if unknown primary isn’t common but there’s a few on here who  have been in same position. Thinking  off PFJTHS he has bern in same position over a year. The chemo radiotherapy route is the usual way tio go am sure Peter will pop on he has taken a different route. 
we can help eith radiotherapy n chemo I am almost  3 years post radiotherapy for tonsil cancer with several affected lymph nodes now living life tk the max. It’s a worrying time leading up to treatment. It can happen that the body burns the primary cancer . Trust your husband’s medical team plus keep off dr google please 

keep in touch Hazel 

Hi Bex

I am like our husband and have been since Nov 2019 although they did actually once find he primary in my tongue (Jan 2021) only for it to disappear by the time surgery came around!! 

It is frustrating.  In my case I've decided not to go forward without a defined target.  Instead  I have checks around a monthly+ cycle to see if anything has changed and if it does then decide what to do.

That option is not right for everyone with CUP as my case is a bit of an outlier, but your husband sounds very much like me...

Happy to chat further if hat will help 

Hi Bex, I had a lump in one of my lymph nodes in my neck but despite scans, biopsies and tissue taken off the back of my tongue my Primary also has not been found. My tonsils were removed when I was a child. My diagnosis was given to me exactly a year ago this week and my treatment was 2x chemotherapy and 30 x radiotherapy. I finished my treatment last August and so far everything is looking fine. I feel as well as I’ve ever felt but have a few long term side effects which are slowly getting better. I will admit I do have periods where I can’t stop thinking about the Unknown Primary but I have full faith in my medical team who are closely monitoring me for the next 5 years. As my consultant says my own body might have dealt with the Primary itself and that’s what I’m grasping on to, otherwise I’m going to waste my time worrying about it when it might no longer be there, if it dies rear it’s head over the parapet then we’ll deal with it then. I’m now focusing on going away for short breaks every other month and have booked a yacht cruise (just 40 passengers) round the islands off Croatia for September 2022. 

Hopefully your husband might find out a bit more once they’ve checked his tongue next week (Mucosectomy) but if they don’t find it, he’ll join me and PFJTHS in our CUP club and we’ll support him where we can.

Best Wishes

Carol x

Hi Bex,

I found a lump in my neck in Feb, biopsy showed HPV+ SCC.  Had MRI, CT and PET scans, no primary tumour on any.  Had exactly the same surgery as your husband, small tumour was found in base of tongue and removed fully with good margins.  They only saw it on biopsy after though, not during surgery though so I was so glad they just took everything out!!

I did have to have chemoradiation after, this was for my neck lumps (3) though as they were not suitable for surgical removal.