Hello,

I have found useful answers to my questions on another posting (thanks for that) regarding f-up PET/CT scans but I would like to know a bit more about your experiences.

Since my husband has completed his 35 treatments of RT in April 06 (SCC of BOT/modified radical neck dissection in Jan 06), he had no f-up scans of any kind. He just has a clinical examination every 6 weeks.

It appears that in New Zealand this is the way to go as they hane no PET scan machine. There is no investigational PET scans and doctors send patients to Australia when needed. Needless to say that there is absolutely no PET scans post treatement! Actually this is what happened to us in December 05 when we presented our case (after reading loads of journal articles) to the oncologists/ doctors in the light that after un-conclusive biopsies, David was about to be treated as a "unknown primary". The funded David and he had a PET-CT scan in Aussie. It showed the location of the primary!!

Now we are back to square 1 with this Pet-Ct scan thing. We have discussed the issue with the RO and surgeon and they have strongly discouraged us to have one. To their opinion, it seems that there is high rate of false positives and little to do if metastasis show in other organs. Consequently we have looked at the literature on the Net. David has also contacted some ENT specialialists in Aussie who appeared to be sceptical about our RO and surgeon approach here.

I have to be honest though, the doctors are open-minded and will look at any avenues helping but they also have the constraints of working with budgets in a public system. There will be colleteral damage. We have to make sure that we take our health issues in own hands.

Despite the fact that we have given all the journal articles on PET-CT scans f-ups to out RO ( who is the one following David), yesterday we were told that no PET-CT scan will be funded. We told them that all we need at this moment is a referral form and we'll pay for it. We discussed about it last night and it opened an all new road that we didn't know existed..... if something should come back positive and there is nothing to do, do we want to know????

David has suggested that we asked the experts, so here I am!! I must say we are confused. Has anyone have some thoughts on these issues both f-up examinations of any kind and would you like to know or not???

From down under, marie-lyne