At the begging of June I was diagnosed with ogj cancer I them had a PET scan which showed nothing except some activity in the tonsils which I was told was probably nothing as it often showed up on the pet scan. However I was referred to ENT as a precaution .The doctor there told me they looked fine but then said he'd talk ro his boss, and he then came back and said his boss thought there was some assymetry and might they be worth removing but it was up to me. I said I wasn't sure as this would delay the. Chemotherapy and would talk to the oncologist about it.. a week later the oncologist seemed to think it was a red herring and we should start the chemotherapy as soon as possible then so do another scan and maybe take out the tonsils after if they still looked suspicious. However he did agree that for the cancer to spread directly to the tonsils would be extremely rare. So two weeks later after having the PICC line inserted two days earlier was sitting at home ready to set off for the first session when I get a phone call telling me not to come in as they had decided to delay the chemo untill after the tonsilectomy. So two weeks later i have the preop and the tonsilectomy is scheduled for a week later(next week). Then I will have to wait for the biopsy which if comes.back positive then they will offer some palliative care ( though they keep emphasising they don't expect this)
But there is a bigger risk that it really will spread locally or to the liver making any further treatment pointless.
I can't help wondering why they changed their minds. Is it' a cost issue? Have they decided this gives me the worst chance of survival? So it.willl save them a lot of money ? I can't see any benefit to me apart from another six weeks of massive stress of not knowing what's going to happen anymore and more pain and weight loss due to bring unable to eat solid foods.
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I really would like to understand the decision better as.no one I have asked seems to understand it either Has anyone else ever had a tonsillectomy first?
Regards
Joe H
