Hi Dan,
I’ve just read your post and I am very similar to you and have also had pretty awful experiences with my Oncologist not telling me all the fine details that I need in order to cope with living with the disease and treament. I’ve previously been told I was “all-clear” (as in no evidence of disease) at one appointment, then three months later being told the mets are still the same and I was never all-clear, it was just my liver that was all-clear. My Oncologist doesn’t remember what she says to me from one appointment to the next and I get told different things by the breast care nurse compared to the Oncologist!
So yes, the very poor, inconsistent scan reporting is apalling and it happens frequently. I made a formal complaint to my hospital Trust and managed to get some sort of resolution. I also happen to be friends with an excellent Radiology manager. When I met with the Head Consultant of Radiology as part of the complaint’s process to go through why the heck every single scan is reported differently and nobody ever seems to have a clue, the answers I got from both my friend and the Consultant were the same.
The Consultant described it like this: “Intepreting a CT/MRI scan is like an artform in itself. Different people will report scans differently, focus on different things, write their reports differently. Its not an exact science because we can only tell so much from black and white images.”
Just to give a very anecdotal example: you could get a newly qualified radiologist writing a brilliantly detaild scan report because they’re probably excited on their first day and putting all their efforts into the quality of it. So the report is a page long and they’ve gone over every spot they found.
You might then get an experienced Radiologist who just does a four sentance report, because their experience has taught them what the main things are that the Oncologist wants to know, so they don’t bother going to detail on the rest. Or there is a complete difference of opinion between Radiologists, with one reporting no new visible mets and another reporting there is.
After I had that meeting with the Head of Radiology and the Trust’s Complaints Manager, I felt better because I finally understood that “they just don’t know”. So I have had to adapt what I am trusting them with - not knowing for definite, but making their best educated guess. I suppose the other thing is the marker for switching treatments is the cancer remission or growth…I’ve been told that they allow up to 30% new cancer spread/growth as the threshold limit for changing treatment, as Oncologists generally do expect the cancer to stay a little active but within controllable limits on each treatment type. Or so I’m told!
Its worth remembering that your body is a living organism and there will always be changes at every scan, its how you cope with it all that matters the most. This is something I feel would be helpful to be told right at the beginning but Oncologists generally deal with patients who don’t want to know so much information so I think it throws them when they come across patients like you and me.
As for myself, coming to terms with the not knowing 100% from scan reports has massively reduced my stress levels and I’ve learned to “let go” of needing to know. I suppose in a way this is also because this meant I had finally come to terms with what was happening to me and because “we’ll never really know what’s going on inside us”, I decided to take the approach of “stuff it, may as well live my best life now.”
I hope you manage to find a way of dealing with all the uncertainty. Definitely keep on top of challenging them and asking questions though - they do get it wrong sometimes (in my case they totally dismissed a spot on my spine at primary diagnosis, which we then found out a year later was indeed the cancer). The Head Radiologist told me that I always need to “push the big red button” if I don’t feel well or am experiencing new pain and am being ignored. Basically kick up a fuss and force yourself to get seen to, for your own peace of mind.