Breast cancer spread to bones

Hi MissMolly 

I am sorry you are in this situation. It’s hard enough without finding things out in the wrong order and having mixed messages. It sounds like one good thing to hang on to is they expect you to live for more than 5 years. There are good treatments for oestrogen positive secondary breast cancer. Mine if of a different type so I don’t have experience of them, but people seem to tolerate them well and they work well. I hope this week’s meeting does produce a treatment plan. 

Thank you for your very quick reply. And delighted to hear that you are in remission.  It does help to talk. It will be nice to have some information because at the moment I know very little. 

Pop back on here when you know your treatment plan, there will be others on the same treatment.

Hi MissMolly.  I wanted to wish you luck with your oncology appointment this week.  I have secondary lobular breast cancer with bone mets in most of my bones.  Pelvis, hips, ribs, spine and skull.  I am on exemastane, ribociclib and denosumab.  Been on this since December 2024 and cancer is stable.  Good luck and please let me know how you get on.

Lee x

hello Lee, I am so grateful for your comments. It’s a very scary time so to hear from someone who’s been through it and such a positive message really helps me. I do appreciate the time, thank you x

Hi MissMolly, how did you get on this week?

Lee x

Hi Lee ok - I need radiotherapy to spot weld (doctor’s words)  then ribociclib and denosumab.plus one more I have forgotten the name of. Had blood tests and have to have another CT scan but all very positive and the consultant was great. Feel better having facts and am aware I may feel worse before I feel better. Advice for now is to take regular pain relief. Thanks for asking Lee x

Hi MissMolly I am glad that you are feeling better.  Always good when you know your treatment plan.  You will have to see dentist before you start denosumab.  I had radiotherapy on my spine last year.  It did help with the pain.  You are lucky your consultant is good, nothing better than having a positive oncologist, mine is the same.  In the beginning I thought my life was over, but it is definitely not.  We have been on holiday to Portugal and Iceland and going to Portugal again in September.  You can have a good life, mine is just a bit slower than before .   One thing is to try and keep as active as you can.  I walk my dogs every day and do Tai Chi on a Friday.  There is a brilliant cancer charity called Penny Brohn.  I do online zoom with them, clinical hypnotherapy and the tai chi.  What pain meds are you taking. I am on tramadol?

Lee xx

Spot welding is a wonderful description. I have a different cancer so I don’t have any experience of ribociclib or denosumab. Was the 3rd drug fulvestrant by any chance? That trio is a common protocol. People seem to do well on it from posts I have seen. 

Hi Lee, thank you so much for your reply. You have no idea how helpful it is. Last four weeks I’ve been wrapping myself in cotton wool ever since they mentioned weak bones, but now I feel that I can be a bit more confident. They mentioned about the Dentist I only went about two weeks ago. But since then I’ve managed to chip a tooth and I thought I’d see the hygienist as well before my treatment. In a really old way, I find the tooth problems more scary. I will have a look at the Charity you mentioned. I do think I have to include an exercise schedule. I’m usually fairly active but I’ve become a bit of a couch potato over the last few weeks. At the moment I’m taking paracetamol, ibuprofen, and codeine at bedtime the latter more for my restless legs.

thanks again, it’s so helpful and encouraging to talk to someone who’s going through the same situation 

Debbie x