Questioning the Oncologist

Hi All,

I thought I’d share my recent experience and see if anyone has had similar or advice.

My MRI  and CT scans in the past 4/5 months have showed a lot of changes at the original site of my secondary to vertebrae and to vertebrae with screws fitted. 
After reviews by radiologists they’ve concluded it’s not anything to worry about. 
I always get my scan images etc as I like to check/see for myself what’s going on. It was pretty obvious there’s alot going on there changes wise and so I’ve questioned this with my Oncologist.

My Oncologist has been pretty honest…after insisting everything looks good, admits they don’t know if the changes are cancer progression or not. However, she is of the opinion unless something obvious occurs in other areas, wants me to stay on palbociclib as long as possible. Whether the cancer is still active there or not is a moot point as it wouldn’t change what treatment I’m on. Palbociclib is the best treatment I can be on and when I have to come off it the options are limited.

I just don’t understand how they don’t want to know for certain if it’s cancer progression or not. Knowing if it is or isn’t makes a massive difference to me. Is cancer still brewing away or is it just radio/surgery caused. Knowing either way could allow me to approach life in different ways.

why wouldn’t they do a PET CT to check etc.

It really feels like unless things change in a big way I’m just left as I am. 
I’m someone who needs details good or bad, I can’t just blindly go along with things without understanding and questioning things. I’m sure the decisions being made about my treatment are correct but feel I need to keep questioning everything so I don’t get forgotten about.



Hi Dan,

I am having a similar experience with CT scan result to my liver. I always ask for copies and the findings are so inconsistent and contradictory. I queried this with my oncologist who said the results differ depending on which radiologist is reading them. They all have different ways of measuring/ determining what they see on the scan! I find this quite remarkable as surely when they study to become radiographers aren’t they all taught the same way? If this is true one radiographer could say I was “ stable” and another could say there is “ progression”… As if we dont have enough to contend with!

Debs x

Hi Dan

I’m your complete antithesis - the less I know the better.

Are you told your blood marker pattern? When I started Capecitabine, my markers were 128. After cycle 4, they were 28, and now 23 after cycle 5. They can’t drop much lower. The average person has these markers from other secreting cells, around 35, so it seems to me something wonderful has happened and my oncologist tells me there is no cancer activity. I know that doesn’t mean the cancer is cured (it won’t be) but it is under control for as long as I can cope with fluorescent pink palms, fatigue and dryness and the drug keeps working.  Neither my MRIs (Jan 2020 and Jan 2021) picked up my cancer. CT scans just identify suspicious areas - if they are cancer they’ll get treated anyway so I don’t worry. This is why my onc is putting so much emphasis on what’s going on via my bloods. But I was told none of the scans would pick up my skin lesions as they are superficial. I don’t understand why they don’t do biopsies on them to be sure they are malignant or benign. Maybe it’s the fact that I can feel these and they don’t feel much different from at the start. They bother me and make me doubt, which is somethng I could do without. Meantime I’ve been told I need another MRI of my head - why? It’s like I’m invisible to the scans - even had a clear mammogram when I had two stage 3 tumours! A PET scan had been mentioned early on but ten I was told how it works and it’s not needed at this stage of treatment (maybe because it’s all surface cancer, as far as we know. One day it will be elsewhere. Pity.

All the best, Jan x

I’m waffling, sorry. I have started cycle 7 this evening and it affects my brain quickly.

Dear Dan, 

Hope you are well.

Please PM me if I can help.

Angel Eyes x 

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.