Confused Hi everyone
I was diagnosed with bone mets in skull and spine in July 06, following a bone scan, which had been requested because of pain in left hip. Hip apparently ok. I had some radio to back in August. Following more pain in back higher up I had further bone scan and mri in February and March. This showed spread to 3 other areas on spine. More radio. I mentioned bisphosphates to onc in Feb and he blethered on about trusts and cost etc etc. I mentioned them again recently after mri scan and he said that they were only prescribed for people “exhibiting sympoms”, because they are expensive. Is pain that can be resolved with radio not considered a symptom?
I have been on arimidex since November 06 following removal of my ovaries. I was on tamoxifen for 2 years prior to that.
I still have pain in my left hip and more recently have been experiencing pain in my right hip. It hurts on moving which would suggest joint pain rather than bone but the “sticky out hip bit” always feels bruised to touch.
Having read some of the threads I very confused by all the medication out there and am worried that I am not getting treatment that might help.i.e bisphosphonates?

Any advice welcome
Many Thanks
Ally x

Ally I thought EVERYONE with bone met was automatically put on to bisphos and also those on Arimidex. Bis phos improve/arrest/slow down bone mets.
You should have been put on bisphos as soon as bone mets were diagnosed. This leaves me gobsmacked.
Time you got on your hind legs and started shouting. Take a concerned and vocal friend/relative with you to your next onc appt- a witness makes a surprising degree of difference to offered/prescribed treatments! If next appt distant phone onc’s sec and ask for instant appt due to pain. The hip may be OA- sadly possible to have mets and OA in same place,
Don’t accept the brush off and do poke around online for info about Pamidronate, ibandronate, Bonefos etc so you are armed with necessary gen. best wishes, dilly

Bone Mets Hi Ally

I was diagnosed with bone mets in the spine and hip in Feb 05 and was started on Pamidronate straightaway. I also started the chemo Taxotere which unfortunately did nothing for me and then moved on to Xeloda which worked a lot better. Some tumours were eradicated and some shrunk. I was advised that a biphosponate can eradicate tumours in some people and possibly stop the spread as it is a bone strengthener. I think you need to push your Onc for a biphosponate. What does he mean by “exhibiting symptoms”? Surely that is exactly what you are doing, bone pain, MRI and bone scan showing spread! I would also recommend that you ask your GP for a calcium and Vit D supplement called Calcichew. So far I have been lucky and not needed any radiotherapy. Maybe if you had a biphosponate you wouldn’t need anymore radio.

I also had my ovaries removed and went on to Arimidex from tamoxifen and now have the most horrendous hot flushes. Hopefully they will disappear eventually!

I take quite a lot of supplements which seem to help and I would also recommend Omega 3 for joint suppleness and selenium in general.

I hope I have been of some help.

Best wishes.


Hi Ally, I was diagnosed with both bc and bone mets in 2003 when my hip fractured. I’ve had a very succesful hip replacement and have had a great response (so far) to hormonal treatment.
My bloods show no cancer activity at all but I’ve been on bisphosphonates since early 2004 and my bones feel strong, I take, need, no pain killers.
Bisphosphonates also help control and deal, with the calcium levels in your blood too. I do hope you are able to start bisphosphonate treatment very soon.

Thanks Thank you everyone for replies. I was beginning to think it was me expecting too much. I mentioned bisphosphonates to GP recently and she had never heard of them being prescibed for bone mets/secondary cancer…only osteoporosis! Think I’ve got me work cut out with this health trust!!

Hi Ally,

Like Dilly I am gobsmacked by your oncs attitude. I was dx with bone mets to spine, skull, one side of pelvis, in 2002 and there was a slight delay in starting treatment because I had a holiday booked the following week and wanted to take it, plus Christmas then came along :). It was therefore about 5 weeks before i started on bisphosphonates (pamidronate). I had a further bone scan 6 weeks later and the bone mets had spread to involve all my spine plus the other side of pelvis, ribs and collarbone!!! This could have been due just to the 5 weeks delay in starting the treatment - or it could have taken a little while for the bisph. to arrest it.

The good news is that after 3 months of treatment i was able to stop all painkillers and after 1 year my bone mets have much improved. All the skull lesions do not show up on scans now, and spine is much improved.

So echoing what others have said - get armed with as much info as you can - and take someone with you. I can understand an onc not treating bone mets when there is just one small area - but when it is spreading!!! no way. Go for it and good luck.

lol Dawn

Breast Cancer Care ‘Bisphosphonates’ factsheet Dear Ally

You may find this factsheet helpful to read prior to speaking to your medical team as it contains information about different types of bisphosphonates and their use. You can read it via the following link:

I hope you find this useful.

Kind regards
Forum Host
Breast Cancer Care

Bisphops… Hi Ally,
I have just caught up with this thread and an absolutely aghast that you are not being precribed bone sprengthening drugs.

I was dx in Jan 2003, have no known mets, but about a year after FEC and rads I got severe pain in my left hip. GP fobbed me off with an ordinary x-ray at my local hospital (not the one where I am treated for cancer and Crohn’s) that showed nothing wrong, He then sent me locally for some 3 months of once weekly physio - helped a bit, but I still had problems at night with the pain.

Then, a few months later, I had my annual review with the bc surgeon (I don’t see the Onc for whatever reason the hospital deems) and told him of my hip pain. I had a bone scan within a few days and it showed arthritis in both hips, hands and feet. No meds prescribed, just a letter confirming the scan results. I have lived with the pain ever since. This Jan my gastro was concerned at my hip problems (due to taking steroids for some 37 yrs, which weakens and thins the bones) and he ordered a DEXA bone density scan, which is a different scan to the one the bc surgeon ordered. It came back that my bone density has decreased significantly since my last one in 2001, before I got bc.
The bc surgeon followed this up for me, although it was ordered by the gastro. I now have two conflicting opinions - gastro wrote to say everything is fine and good news (I could cheerfully wring his neck), but the bc surgeon said he would write to my gp asking him to prescribe appropriate meds.

I saw my GP a week ago, asked him whose opinion I should take, and he said the bc surgeon’s,and he has prescribed Alendronic Acid (a bisphophotase) once weekly, and twice daily Calcichew tablets, which include Vitamin D. I have written to my gastro for an explanation of his opinion, which so differed from the bc surgeon’s.

I would be very cross, and indeed concerned, if I were you, in not being prescribed appropriate meds for your current condition.
Hopefully you can follow this up and get the meds you so obviously need.
Take care, Liz.