Hi Pam, thanks so much for your message, that was really useful to learn about the Recist thingy! I will make sure to ask about that when I see my Onc next week. Thank you as well for your reply to my other post, it was really helpful and I've felt a lot better about it all today 😊 How is your drugs trial going? Please keep us posted and let us know how you get on after your scan results xxx
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!
No problem Gillyflower
I have been in your situation many times so understand how you must be feeling. You are like me that you need to know everything! I do a lot of research to make sure I’m getting the best for me and my type of breast cancer. I also have ‘annoyed’ (shall we say 😉) my oncologist by challenging their decision and for asking for a second opinion on many occasion. The longer you live with this condition/disease the longer you understand things and I have also learnt so much over the years from previous members of this forum which is why I try and share as much as I know that others might find helpful. I don’t think I’d know as much by just speaking to my oncologist or even reading what is meant to be up-to-date material, this forum is so much more up to date.
Anyway, good luck and keep on keeping on!
ps thank you also for your glowing reference 😊
Thank you so much for your reply, I don't know how you do it, but honestly, you are like a guardian angel with the amount of support and knowledge you are able to share on here 🤗💗 Your experience carries so much weight that it is like a life-line. Sending you a massive hug back! xx I am always conscious you are still going through your own treatment as well as being so incredibly supportive to the rest of us, which makes you an even more inspirational person to me, and many others I'm sure xx
Thanks for pointing out that its good that we know about the spread before it gets much worse - I always forget in my moments of distress that actually I prefer to know about it because I can do my best to deal with and it could be much worse!
You're right about them trying to spare us the details as well, this I definitely forget. I'm sure I am a very unusual patient in that I am absolutely OCD about wanting copies of all my paperwork, asking very complex clinical questions, challenging every decision and having brutally honest discussions about my disease. I think sometimes I probably make them feel more uncomfortable for being so starkly realistic when they are trying to "molly-coddle" me haha. Oops.
My Breast Care Nurse has been incredible and confirmed she will do me the referral to The Christie Centre today, she has been a pillar of outstanding support to me, so I took a moment to be grateful for that as well as others aren't so lucky. You are right, I will bounce back once this obstacle has been dealt with - thank you for reminding me, it was exactly what I needed! 😊 xxx
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.
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