Hi nicky thank you for your reply, I do have tumour Markers taken but don't believe these are that accurate are they?
I also wonder if it is not felt I am on a new treatment regime if I'm starting zoladex, letrozole and Denosumab?
I did ask about a sooner scan but unless something arises or changes they will not be bringing this forward, but by then isn't that a bit late in the day.
I find much confusion over how and what people are treated with drug wise and if they have surgery or targeted radiotherapy and their follow up scans etc. I know we are all different and obviously different types of cancer require different drugs but still I feel this is a big grey area depending on area and hospitals.
I wish you continued health and thank you again
You are a true inspiration to me and many others.i haven’t been on the forum for quite a while since being diagnosed with secondaries to bones from the get go in May 2016.
i have been so very lucky so far in being kept stable by hormonal therapies.
next week I have my four monthly scan and review so the ‘scanxiety’ is definitely kicking in right now. Every time I go I keep thinking when will my luck run out.
anyhow sorry for the ramble, I just needed to get it out of my system tonight.
good luck and positive vibes to everyone else out there going for scans this coming week.
It does tend to be up to your oncologist how often you are scanned. However I have always been scanned every 3 months when I have started a new treatment, it has then been moved out to 6 or even more months depending how I am responding. It might be that you have your tumour markers taken? I don’t so my team don’t have that information to rely on. If yours are taken maybe your oncologist will use them to see how the treatment is working. If you are concerned you can always ask your oncologist to see if you can have an early scan.
It would be interesting to see if anyone else adds comments on here to see how regularly they are scanned, particularly at the start of a new treatment.
Good luck with the new regime, it’s a breeze compared to having the chemo element! I had it back in 2016 when a liver biopsy showed that I was HER2+ so I was put on that regime. As it was it turned out I was only very slightly HER2+ so I didn’t benefit from the H and P elements.
I read your posts with positive inspiration and your words I'm sure give many of us some support and encouragement. I am going to join the bone mets thread as I feel this will help me and my concerns quite a lot, but everything seems very new to me at the moment and still trying to get my head round my diagnosis as many of us do. But just wanted to ask you a quick question from your experience you mention that like yourself ladies who are having this continuous treatment for breast cancer and bone mets will have regular scans to see how their treamtment is managing their disease. If you don't mind me asking how often do you have your scans, I was diagnosed with breast cancer and bone mets at the same time Nov 2018 had 6 rounds of chemo and 2 targeted drugs H & P. Now I'm still on H & P, denosumob, zoladex and Letrozole. I had a staging scan last month pre the hormal treatment which shows partial response and have now been told my next scan will be in 6 months. I worry about this length of time as I am starting new treatment, I only had a breast lump reduction of 1.8mm to 1.6mm from Nov last year to this April so understandably think that's quite a small change hence my concern re the length of time before I will be next checked. Is this normal practice and any thoughts would be greatly received.
Sorry to hear about your diagnosis but you’ve come to the right place for support and help.
We had a very active thread called ‘Bone mets please join in’ which keeps going a bit quite since this latest version of the forum was released. I’ll ‘bump it up’ for you and it’s a good place to add a comment as a lot of us users will check it out. The forum is a bit confusing, to say the least, as it looks like you are replying to the last persons message only rather than the whole thread but in fact any reply on any thread will be read by everyone so that’s how you can add a comment or question rather than have to start a new thread each time. However when you 1st come onto the forum a new thread like the one you have written does help get some responses.
Generally SBC tends to go to the bones in the majority of cases. A few ladies will not have bone mets, it may be in their organs but that’s why that thread is popular as we all tend to add comments on it. I have been living with SBC for 11 years now and although the shock is huge when you are first diagnosed we all seem to settle into a new normal after starting treatment. However it affects us all differently as to how we cope with our diagnosis and if you are really struggling you should try to get help through your breast cancer nurse (if you’re lucky enough to have one with SBC!) or your GP. Otherwise you can ask questions on here and someone will always try to help as we all know what it’s like to live with this. With your treatment, like most of us, you will have regular scans to make sure the current treatment is working. If it’s not then it will be changed, if it is you can breathe a huge sigh of relief and carry on! We have a term for this - scanxiety! We all get anxious about the time we are due a scan, or more importantly the results of the scan. Sharing on here does help as we are all living with the same fears, side effects, treatments etc and share our own experiences where we can and if it has helped us. We are not experts as such so can’t give definitive answers but we do know exactly what it’s like living with SBC. You may also want to check out the main website for BCC to see if there are any support groups in your area or any planned talks or events which they hold from time to time. Your own hospital might also have similar groups although unless it is a larger, teaching or research hospital there might not be anything local.
I hope this helps
I have secondary breast cancer in the bones. I’ve had it a year and so far am coping well with the treatment. I’m working and feel fine. One day at a time x
Have been diagnosed with secondary just after Christmas this year . Presented in the hip area and have had radiotherapy in the hip area. Now on letrizole, zolatex danosumablib.
a lot to get used to and adjust to what the future will hold . Anyone else has the same similar diagnosis and any suggestions in how treatment is going and dealing with the future