Hi ,
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
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
Hi
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
Nicky x