Hi Danny,
So sorry to hear about your mum’s situation but bless you for reaching out on here and getting some advice and support for her.
I was diagnosed with secondaries in January 2020. My CT scans at the time showed a couple of mets in my spine. I was started on Palbociclib and Letrozole, with Denosumab and Zoladex. In April, I had another CT scan and this time two radiologists had written two very different things on my scan report. The first radiologist had written there were no new lesions at all, anywhere and in fact my bone mets had decreased. Then a second radiologist had a look and wrote that he thought he could “just about see” two or possibly even three new lesions in my liver area, but they were too small to tell what they were (they could have just been cysts).
As a result of this, my Oncologist immediately switched my meds. She told me that we can’t be 100% sure whether I now have mets in the liver but because there is now uncertainty, the best thing to do is switch meds as if it is liver mets, we don’t want them getting any bigger. I was furious and very confused at the time because I couldn’t understand how they could swap my meds given my bone mets were showing such a positive response and they were just making “best educated guess” about my liver.
I switched meds reluctantly and was really angry about this for a good few months. However I have since learned this was a blessing in disguise because a) I feel fantastic on the new meds compared to the other ones and b) my scans are now showing complete stability, which is the next best thing to remission.
In regards to blood tests:
I don’t have any blood tests for tumour markers or anything like that. My Oncologist has never told me that I have these tests done and I don’t see them on my blood results report after every cycle of medication. We go purely off scan results and how I’m feeling physically.
I have since had long conversations with various members of my clinical team about how they interpret scan results and how they make decisions around changing meds.
The outcome was that scans are always the preferred method of diagnosis, followed by biopsy if this is an available option.
The Oncologist doesn’t make the decision to switch meds alone, your mum’s case would have been discussed at a multi-discliplinary meeting and the team will have jointly decided that it will be best to switch her meds. If they have decided this, then they must have some level of concern that the anastrazole isn’t working as well as they want it to. In my experience, Oncologists like to be very proactive and not take chances.
However that doesn’t mean that you can’t challenge their decision and ask for further clarification, which is what I did. Your mum can also ask what are the current options available to her, eg. could she decide to stay on her current meds or would she have to go with the change.
I think its always best to get clarity before making decisions about changing treatment because it helps with the psychological side of things if you trust how the clinical team are looking after you. Sometimes you need to advocate for what feels like the right decision too so just be open and honest about your questions with them until you and your mum feel you have a satisfactory answer.
Best wishes to you and your mum.
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