Bone metastasis

Hi My husband is excatly the same, saw ongologist july, said no sign of tonsil cancer but spread to t2, t3, t10 t11 and pelvis.  Week later he was having spine compression surgery a week recovery then back in to be reopened as bad infection and spine bone poked through scar.  Since then hes going down hill.   He also told rare case'. My question is was it thete before tonsil but not picked up.  He starts radiotherapy next week 5 to 10 bouts and then possibly immune therapy and bone therapy.   Hes also now pallative care.   Sending u big big hugs as i know exactly what ur going through. X

HI Cazza. I'm glad you answered. I have followed your husband's progress since you posted and I'm so sorry that things have turned out the way they have.

Cazza2190 said:

My question is was it thete before tonsil but not picked up. 

He had TPF didn't he? 

I think you might be right. Much early recurrence is down to the cancer being there in the first place and just too small to "see"

Hi McTonsil 

So sad to hear your news

I see Cazza has replied. She also posts in the secondary bone cancer forum. It might be an idea to join her there

Aww bless,  we was told we going for a cure sadly pallative wjich i cant get my head around.   Yes he had TPF which nearly killed him he also HPV. 

Most definitely, my arguement is why wasnt a pzy scan given when they first diagnoised tonsil cancer. For it to be as bad as it is surly not from tonsil cancer.  Seeing ongologist thursday i want answers.    How are u and ur husband coping x   feel free to mesage me anytime x

Thanks Cazza.  Sorry to hear your story.  What makes it so awful is that because it’s  rare, it impossible to find information about successful treatments.  We don’t know yet what will be offered treatment-wise.

Cazza2190 said:

How are u and ur husband coping x   feel free to mesage me anytime x

I suspect this bit is for McTonsil 

Cazza2190 said:

Seeing ongologist thursday i want answers.

Adjuvant chemotherapy like TPF is not routine for our cancer. Was your husband’s cancer very advanced? If it was maybe they should have offered a PET but even then the mets may have been too small to see. 
Best of luck. Do let us know how you get on if you’re up to it. 

Where is your husband being treated by the way?

When did they tell you,  apparantly my hubbys surgeon who done the spine said he could remove from pelvic possible.   When first told in july we where told immune therapy at velindra which is every two weeks for 3 months. Then u get a pet scan. If it dont work they stop it but if signs of working they will carry on for 2 years.  Also bone tjerapy which makes the outer bone stronger to stop anything leaking through bone marrow etc. X