6 months ago i had bone scan ct and mri. Only the bone scan showed 4 hot spots. I was told ’ we think it’s bone Mets’ but can’t say 100% as ct and mri were clear. Last week I had a follow up ct which still didn’t show any changes but because of the bone scan 6 months ago they still think it’s mets but slow growing because of the exemestane I’m on. I’ve been told to stay on exemestane and I’m having all scans done again in another 6 months. My question is has anyone else taken a long time to confirme mets? Has anyone else had clear scans but did turn out to have mets. We took the ‘no change’ as good news but in my mind I’m confused. Do I have secondaries? Just would like to have had a clear answer to know what I’m dealing with
Hi, sorry I can’t help as I was diagnosed by fracture but it sounds, if I have read your post correctly that the Onc does think you have mets? The no change is good in that if that’s the case Exemestane is keeping everything stable but hope you get some more definite answers. I do remember my notes saying “probable mets” when there was no question of my having bone mets.
Hi holly meg
A bone scan dies usually show areas of activity but it may not be mets, it can be degenerative disease. Because you are already on a hormone treatment it must be difficult for a definitive diagnosis to be made without a bone biopsy being done. Having said that, as Belinda has said, the fact it is all stable (if it is mets) means the treatment is working. I had stable bone mets on hormone treatment for nearly 5 years and they too are slow growing so it may be that nothing changes for a long time. Sorry I can’t be of more help.
Nicky x
Hi hollymeg
Along with the support you have here please feel free to call our helpliners to talk your concerns over, lines are open today 10-2 on 0808 800 6000. (Weekdays 9-5)
Take care
Lucy BCC
Thanks for your reply ladies. I asked my onc if sometimes it takes a while to diagnose some, she said yes. I asked her if the exemestane could be making the mets slow growing,she said yes. Best I can hope for then is ‘no change’ again in 6 months. I’m sure you understand, a definite answer would be helpful
Hi Hollymeg,
I think I understand your concerns - I was devastated when told I had multiple bone mets. I was treated by hormonal therapy - letrozole. This was in 2006! - I won’t go into details of what’s happened since then, but I did have 6-monthly bone scans and some showed that the mets were healing (thanks to the hormone treatment).
For almost 8 years I had no significant bone pain… so there is life even after a mets diagnosis. I hope this helps a little.
Hi Hollymeg, I was diagnosed with bone mets last March, following groin pain from the previous October I went to the docs who thought it was muscle strain, then when it didn’t go sent me for an xray (Dec 2013), which showed thinning of my pubic bone, I then had Bone scan (Jan 2014) came back unsure. Then had CT scan (Feb 2014) still unsure. Then had MRI scan (Feb 2014) still unsure. Then finally had a bone biopsy (March 2014) and then was finally diagnosed with secondary…From the December to the March felt the longest most stressfull time of my life, the not knowing for sure was awful. Can you not push for a bone biopsy?? I am now on Ibandronic acid and anastrozole, after the first 3 mothly scan they said I also had a small deposit on my lower back, then my next scan they said it had gone, then after no change in my pubic bone I have gone to every 6 monthly scans, which is next week 
I am getting really bad joint pain which is a side effect of the anastozole, does anyone else get this?
Shellymae x
Hello everyone
My mum was diagnosed with spine bone mets in December 2014 however had no pain which was quite confusing. She then also had groin pain for over 10 weeks before it was decided to do an x-ray which showed a hip fracture - due to the cancer.
Last Friday she was admitted into our local inpatients oncology ward as she has lost a lot of weight and was suffering with blurred vision in her right eye. Yesterday she had head scan and this showed up skull bone mets. She cannot walk as any pressure on her hip puts it at risk of breaking through her pelvis which we have been told would cause further spread. She’s not currently on any treatment and we are being talked through this today.
Have any of you suffered skull bone mets and can suggest what type of questions I should be asking? I’m desperate to make sure she gets the right treatment as we have been let down in the past but I have more faith in this current doctor - he seems to want to get things right. We did also think that this would be a death sentence but reading some of these posts is giving me more hope.
I’d be really appreciative of any support/advice you can all provide. Need to hear that people have survived with bone/skull bone mets.
Thank you
Charlotte