Trying to get my head around this diagnosis

I am sorry you have been diagnosed with secondary breast cancer. It’s often quiet on here so you might also want to join the main breast cancer forum, which is a lot busier and has many users with a secondary diagnosis. Here’s a link Breast cancer forum 

I also have secondary breast cancer although of a different type (TNBC) and different metastasis site (liver) so I have had a different treatment pathway. I had very similar concerns to you when I was first diagnosed in 2022. What I have learned is that there are lots of treatments for secondary breast cancer, particularly oestrogen driven cancers like yours. Many people live for substantial amounts of time in reasonable health. It does take some time to adjust. It obviously makes sense to make sure you have a will, to put power of attorney in place and to ensure loved ones understand your wishes, but beyond that to try to live as normally as possible. For many people it’s a chronic condition to live with rather than an immediate threat to life. 

Hi Cathmeg

Sorry that you have also been diagnosed with secondary breast cancer, which I know now gives us a lot of limitations. I was diagnosed in 2024 with metastatic breast cancer also in my bones. I was very poorly at the time of diagnosis and in so much pain, I had intravenous chemo to start with but now on Abemaciclib and Letrozole I was on denosumab but unfortunately I got ONJ of jaw ( Very painful) so stopped .

I am doing ok all be it doing things at a much slower pace. I still have issues with sleep and fatigue although not in so much pain as I was in 2024. You have to listen to your body and rest when needed, We even managed get travel insurance last year an annual  policy just for Europe so have managed to get away. It is frustrating I know I can’t do long walks, and have endless energy but I’m still getting out and doing things at my speed.

Treatments are always changing and patients are living long with this chronic conditions so try doing things that make you happy. I did a flower arranging course and now doing a Pilates class and learning how to use a sewing machine ( not very well on both) although it gets me out. Hope I have made you feel slightly better. 

take care

Hi Cathmeg and Gibbs 1123.  I was also diagnosed with secondary breast cancer with bone mets in pelvis, hips, spine, ribs and skull in 2024.  I have been on Ribociclib, Exemastane and denosumab since then.  At last oncology meeting my cancer is stable and they could not see the skull mets so it looks like treatment is working.  I had radiotherapy on one of the mets on my spine and it has helped with the pain.  My oncologist referred me to orthotics and they have fitted me with a back brace.  I have four dogs and use this brace when walking them or around the house doing gardening or housework.  I have a good life and have been to Portugal and Iceland on holiday and planning another trip to Portugal in September.  I do get pain and have slowed up somewhat but I manage it.  I had a chat with a clinical trial nurse on Tuesday and she said people with bone mets can lead a good and long life.  It does get better in time.  I am also planning on starting Tai Chi.  Hope you both are doing well and happy to keep in touch.

Lee x

Hi Leelaloo

It seems we are very much the same, I have it in my hips, spine shoulders and skull. The oncologist had mentioned lungs also, my liver had some but now shows nothing so treatment must be working. All scans have been stable and tumour markers have decreased started off at 1275 in 2024 and now 188. 

I can walk better but have to stop regularly for a few seconds due to back pain then I carry on again. If I do to much I get very uncomfortable trying to move after sitting, going upstairs is then not very elegant (on all fours)

Glad that you have started a tai chi class and having some holidays away something I didn’t think would happen again in 2024. Staying indoors sometimes does not help as we become isolated so always better to try and get out and make the most of our life. 

I am happy to keep in touch, where in the country do you both live? I’m in Warwickshire. I was granted medical retirement in 2025 so I now have more time to concentrate on me. 

Regards to both 

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