BONE METS and TUMOR Markers Her2- Fulvestrant and Palbociclib.

Hi I have posted a few times on behalf of my Mum but now I am looking for some understanding.

April 2020, Mum diagnosed with grade 3 - 4cm tumour - invasive DCIS , mastectomy and radio, no chemo - 1 out of 16 lymph nodes positive (micro mets)

Bone scan and CT clear in May- apart from some patches in her lungs which they thought were related to complications of the anaesthetic for the mastectomy.  

Blood tests showed anemia and vit D deficiency.

In September she had a follow up CT scan and then an MRI which showed suspected bone mets in her spine, like a scattering of deposits, but lungs now normal.

She has been taking anastrozole and bone medication since May 2020 and they wanted to keep her on this for as long as possible.

Over the past few months she has had 3/4 blood tests which have shown an increase each time in tumour markers, she also had a recent CT scan and bone scan in November which looked normal, even the bone scan did not show any changes since May (which now they think was there all along) but were hard to differentiate.

The oncologist now wants to switch her from anastrozole to fulvestrant  and Palbociclib as he thinks the cancer is active in her blood, yet the scans are not reflecting this.

This must mean the anastrozole is not working to control the cancer?

We have found this to be very confusing and just want to see if any other women have similar stories or if you are taking this combination of medication and have had success in controlling the progression?

Many thanks!

Hi Danny

Sorry to hear about your mum but she’s lucky to have you reaching out on here on her behalf :slightly_smiling_face: .

From my limited experience since being diagnosed with secondaries this year, I have learnt that blood tests are not accurate for everyone so far as gauging the activity of cancer in the body. Tumour markers can raise when a medication is working as cancer cells are dying they give off a ‘flare’ into the bloodstream. I had a conversation recently with my oncologist who said that these blood tests are really only used as a gauge for them to know when to scan as it is scans that are more reliable. The fact that your mums subsequent blood tests since starting anastrozole are showing an increase could be just down to the meds.

Could she get a second opinion? It would be a shame to take her off a medication that from what you say, scans seem to show is effective. Ideally with secondaries we need to squeeze longevity out of each line of treatment before switching. I’ve only heard of meds been switched when a scan shows remarked progression. 

Best wishes to you both x

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.

I was on anatrazol for three years as I had breast cancer with secondary in my spine last year I started with pain in my back and right leg and have been on the same meds as your mum for 3 months now just hope they are working xx