Hi All,
So despite being told by the Registrar yesterday that I had “stable disease and no progression”, I got a copy of my CT Scan report today which very clearly states that there has been “moderate progression” in the bones and I now have new mets in some places with “widespread disease” now in my pelvis. The Radiologist has written something else like “Resist criteria just met”.
The plan is to continue with Capecitabine, despite the progression in the bones. Funnily enough the Palbociclib had better results with the bones than the Capecitabine but until we know for sure what my unidentified liver lesions are, I think the Oncologist wants to keep the chemo going.
Can anyone share their experience of bone met progression generally. I’d also like to hear if you saw copies of your scan reports and if you had your Oncologist tell you anything different to what was on the scan and how you resolved the conflicting information to help you understand what is going on.
What I am finding so utterly bizarre is that I have zero pain from any bone mets, I feel amazingly physically well and am able to go about daily walks and activities with minimal side effects. It really messes with my head with all the conflicting information I receive so I never feel like I really know what’s going on. On the plus side my Breast Care Nurse has said she’ll refer me to Christie’s for a second opinion today.
PS. I’m feeling really low today because of all this. I feel like since diagnosis with secondaries to bones in January, I’ve not had any stability or great success on any of my treatment, on top of dealing with a poor performing clinical team who have no idea what they are doing, treating me without a good evidence base or any proper diagnostics. I’ve never even been offered a DEXA bone scan prior to starting secondary treatment despite the fact I have a family history of Osteoarthritis/porosis. Its making me wonder how on earth I carry on dealing with this, which is not my usual state of mind…please forgive the ranty posts xx
Hi Gillyflower
Sending you a big hug as I know what it’s like to have progression and any changes that that might bring. Back in 2013 my bone mets had gone from a very few (2 or 3) to extensive, mainly because I wasn’t scanned more frequently which meant the spread as not caught early - at least yours has been. I then started on Denosumab, having been on bisphosphonates up until then. This has held the bone mets stable since then even though my liver mets have changed and therefore treatment has changed. It’s tough getting your head around this, I have also had a situation where I haven’t been told the full story, of the CT results - maybe they just want to spare us the detail, which doesn’t help in the long run. I would definitely get a second opinion which I have felt has helped me in the past either to back up what my own oncologist has said or to give me other options.
A difficult time but I’m sure in a few days you will come out with a more positive view, you do seem normally so positive, so give yourself time.
Nicky x
Morning,
having just replied to your other post in the private group, I won’t repeat my reply here. Just to say, I also have mets progressions, lungs, liver and bone tho I’m TNBC and am currently on a drugs trial. Scan next week to find out if it’s working!
The Recist mention refers to a system they use to measure improvement, stability or progression in your disease. To use the Recist criteria, tumours have to be measurable on a CT scan so that comparisons can be made from one scan to another. When there are multiple lesions which makes it hard to compare scans, they will identify 5 or so specific tumours which they can then monitor from one scan to the next. They seem to then focus on these few tumours in their reports and any change in these can dictate their view of the success or otherwise of any treatment. I understand why it’s done but reporting only the Recist info doesn’t give one the whole picture so it wasn’t my favourite but as I had all the back copies, I could still ask awkward questions if I wanted more clarification.
Hope your BC nurse is able to progress your request for a second opinion. Thank goodness for someone on your side. Fingers crossed you get some help soon. Don’t lose heart. We all have crap days but somehow manage to fight another day, despite the system!
Pam x