Thank you for telling us a bit more of your story too xx Every bit of info gleaned from others will help someone who is just starting out xx
Yep, we need to be our own advocates .... LOUD, if need be!!
My own mantra is:
IF IN DOUBT, GET CHECKED OUT!
As you say Minnie18 - it is LUDICROUS to force appts on different days as it is just more stress & inconvenience, specially if you have a young family or other responsibilities/commitments! But particularly if you live in rural/regional/remote areas - where it means you then need to spend another night there as well ... which then costs the Gov even MORE, as they are usually paying for the accommodation as well the scans! DUH!
That's great that you have the Indefinite Referral with your Onc now xx. I do too .... I was just wondering the other day if that means I can just arrange an appt with her (now that I've officially signed off with her after 7 years) in case I have a query!!
ALL cancer patients should be offered Indefinite Referrals right at the start - as they are guaranteed to be seeing their Onc/Surgeon for a minimum of 5 years - and just adds more stress & costs to the patient (AND the Gov) by forcing unecessary medical appts just to get a bit of paper signed off - AND overloads the GP's books, preventing others from getting appointments! grrr
I haven't had a whole body MRI/CT yet .... I honestly believe it should be done in the first year of treatment (after diagnosis) on ALL cancer patients - as it is a 'snapshot' of their body at THAT moment in time .... so that when/if anything else is diagnosed later - they can go back & check that scan to see if they missed anything at the time!! Sometimes, it may even pick up progression EARLIER - so they really know what they are dealing with!
Take care xx