Awaiting full diagnosis

Well at least it's only a short postponement. He will be a bit sleepy when he comes home. I wasn't particularly sore after my panendoscopy buI could feel discomfort in places I hadn't had before., they had obviously had a good look round My tongue was bruised each side where they had to hold it out I guess. Results were in two weeks.

It will put him in treatment through Christmas unfortunately which was what happened to me. The following Christmas was wonderful and yours will be too.

Unknown said:

Dani- I hope your trip was OK?

Thanks Cat...yes I was fine. I found a mucous cyst in my throat and just wanted it checked out. I was hugely surprised that they got me in three days after I contacted my CNS.....There's service for you.

Hang on in there. The wait is nearly over and once you have your plan of action you will feel better

Hi Cat in the scheme of timings it won’t make a difference. We all say it and it’s true the waiting is horrendous there’s nothing anyone can say to make it better. I dreamt I went to my own funeral I started putting things in order leaving  notes round the house so hubby could find them. Well here I am 39 months later living my life riding my bike ate out for hubby’s birthday yesterday . During after treatment never thought that would be possible. Plus regularly cycle 60 km a day. Just hang on in there this Christmas will be a blur but there’s always next year. 
Keep away from google,  cancer doesn’t define me it was a mere blip. 
Hazel 

Thank you Hazel and Dani 

the surgeon for tomorrow called and said they didn’t find anything on the PET CT except both his tonsils showed so they’re going to whip them out at the same time. I feel encouraged by this. Also a bit annoyed because the surgeon said it means they haven’t found the primary yet, although they’ll be biopsying lots of places tomorrow 

Dani glad to hear they saw you so quickly 

I must say I’ve been impressed with the drs so far. My partner keeps getting annoyed at all my questions but it’s quite funny. 

Knowledge is power. Keep asking. 

Hi Cat.  A couple of things.  After my diagnosis in mid November I went to the USA for 3 1/2 weeks.  The consultant was not too pleased with me but the CNS said it would make no difference.  I used that time to chill and sort out all the scans and other appointments for as soon as I came back.  I could have done that from home and missed a holiday.  In the end I decided to delay my surgery until after Christmas so I could have one last "good one".  The message is that in almost all cases a delay is not significant to the outcome.

There are a few of us who have been Cancer Unknown Primary (CUP).  It is a worrying time, rare but not unknown.  After scans and biopsies I had both tonsils removed and all the lymph nodes on my RHS neck removed and still nothing turned up!  It was found eventually in my tongue 18 months later.  Scans have NEVER shown my tumour.  A diligent surgeon and regular checks did.

PM me if you want additional information, either on coping with the CUP and/or the tonsillectomy - which I guarantee will be memorable!  There is also a forum for CUP on here, but it is relatively inactive.

Hope tomorrow goes OK.

Hi Cat

Hope the biopsies went well today.

Keep asking those questions.  Much better to ask than stew over things.

All the best

Linda x

thanks Linda and Peter 

Spoke to the surgeon a little while ago and waiting to pick up my partner. Surgeon is pretty sure he’s found the primary in his right tonsil. Tonsils are removed. Biopsies done. Now to wait for histology. 
they’re going to try rush them through for the MDT next week meaning we’d be seen next Thursday. If not it will be the one after. 

I must say I’ve been very impressed with the drs so far. 

waiting to pick the patient up from hospital. Apparently he is eating a bacon and egg butty. That will be the morphine i would guess ;) 

thank you again for all your support it means a lot. 

So pleased everything went well

Unknown said:

waiting to pick the patient up from hospital. Apparently he is eating a bacon and egg butty. That will be the morphine i would guess ;) 

Yes be careful when it wears off.., I haven't had my tonsils out but everybody here who has says it's b****y painful for a week or so.

Ah, that's great.  Thanks so much for the update Cat.

Fingers crossed for next week.

Linda x