Bone Mets - Positive stories welcome

Hi Everyone, my names Alex, 25 living in Manchester. Primary diagnosis was in 2013 aged 23, however I have recently been diagnosed with Bone mets to my hip, spine, ribs, shoulder and skull (that bit terrified me). I’m currently recovering from an operation where they fit a pin through my hip and femur that has been affected by the cancer, to prevent fracture. I start Capecitabine chemo this friday and Denosumab injections monthly. I’d love to hear from anyone that has experienced a similar secondary diagnosis and how treatment has helped? I’m quite frightened at the moment so it would be nice to hear some positive stories :slight_smile: Thanks and hope you’re all ok xxx

Hi Alex

Welcome to the BCC discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies could I suggest you ring our helpline and have a chat with the team there, they’re here to support you through this.  Calls are free 0808 800 6000 lines open now until 5pm tonight (weekdays 9-5 and Saturdays 10-2)

I have also put for you below the link to some of our publications you might find helpful.

Take care,

Jo, Moderator

Hi Alex, I’m so sorry to hear this is happening to you at such a young age. I was diagnosed with breast cancer and bone mets together in my early 40’s. I had a fracture and have a replacement hip. Twelve years later, still here, thanks to the usual treatments. I had four and a half years with Capecitabine, good luck with it. Keep in touch, this is a friendly, supportive place. X

Hello Alex and welcome. Sorry you have to experience this. I was diagnosed primary in Oct 2012 and then secondaries just six weeks later. My bone mets are in my pelvis, hips, upper ribs, sternum and skull (Like you these bothered me most). Also there was some in the skin around my breasts and I had shadows in my peritoneal area (abdomen)
Have had bilateral Mx and have been stable since( i.e… 2 years.)The peritoneal shadows are not showing any more.

I was devestated at the time but here I am, just had a fab holiday and hoping to plan another soon.

I was told and am more than happy to believe that skull mets very rarely cross to the brain, something to do with the blood/bone barrier. They have not been monitored specifically but give me no real bother and they tell me that as the rest of my bones are responding then they will be.

My treatment is Letrozole. A lady at my SBCC support group has been on Cap for 4 and a half years.

Keep posting - the people here are very supportive…

Thank you so much ladies, that is great to hear! Here’s hoping it works for me too :slight_smile: xxx

Glad we could help Alex, there are 2 “positive stories” threads going so you have some more replies.
Hugs Janette x x