after pet scan and surgery

Hi Spencerr

I've come across someone who had tonsils removed, but primary was not found. He still had radio and chemo therapy. I might be wrong but it is my understanding that radio therapy will / could be around the area where cancer could potentially be, as it could be as small as 1mm, which wouldn't come up on the scan

Best wishes

PFJTHSHas  recently had just this and is on close watch without radiotherapy or chemotherapy

Not everybody with cancer of unknown primary goes on to have further treatment immediately

I think you have to be guided by your MDT as it has to be an informed joint decision  

You could private message him

Hi

I had the same, no primary found although suspected around the tonsil area (I had my actual tonsils out years ago). I was advised that sometimes the primary can burn itself out and my Team recommended RT x 30 and 2 sessions of chemo in my situation. That may not be the case for you. Be guided by what your team suggest they would consider the best way forward and ask questions as to their thoughts perhaps. That helped me to decide what I would be happy with.

Best wishes.

Tricia

Hi Spencerr

I’m in a similar situation: nothing found on my tonsils although there is some confusion about whether the primary is at the base of the back of my tongue: the surgeon says yes but my oncologist has asked for clarification from pathology. Nonetheless I had quite a lot of affected lymph nodes and some were quite advanced so I have been advised to have 33 sessions of radiotherapy and 6 of chemo starting next week. I think it will very much depend on your individual circumstances and the course the cancer has taken as looking at the other replies on here, treatment seems to range from close watching to the full works

Best wishes

Hi - As Beesuit says "That's me!"  I'm very happy to talk either openly or in PM.  Just give me a shout.

I think your clinical teams will be balancing up the risks of treatment or wait and see to give you the best quality of life for the longest time possible time.

I do also understand how worrying not having a primary site is having been concerned and now accepting that I am on a good and proactive treatment path.