'possible' bone met diagnosis today!! I need reassurance :(

I went for a pelvic x-ray 2 weeks ago, because I had been having pain in my hip. I was then referred for a full body bone scan in the nuclear medicine department last Friday. I was planning on waiting 10 days for the results, then when I got home this evening there was an urgent message to phone my GP as soon as possible. I knew straightaway that it was serious. She informed me that the bone scan had shown, ‘bone abnormalities’ in my hip and shoulder. I asked if by that she meant ‘bone mets’ and she said that is what it is looking like, but until it’s investigated further she can’t be sure. She has made an urgent referral at Clatterbridge, my local oncology unit.

I haven’t stopped shaking since I spoke to her! My head’s all over the place. I am so happy with life at the moment, why has this had to happen now? My original diagnosis was December 2006! I guess I need someone to tell me that bone mets is not necessary a life sentence (Although I suspect it is!) Please can I hear some positive stories of people living a normal ‘pain-free’ life for many years?
My hair even looks fantastic, it has taken 3 years for me to be happy with it again!! 2 weeks ago I had it cut into a style that looks great and now in all probability I will lose it again!

Sorry to ramble on…I just don’t know what to do!

Looking forward to somebody putting it all into context for me

Nicky

Hi - from the timing on here I was obviously posting on the other thread just as you did this!
I was dx 2 yrs ago and, other than the rigours of chemo, have lead a pain free normal life since. I do everything I used to but a bit more creakily as I’m now post menopausal due to ovary ablation and then the wonders of Aromatase Inhibitors. There are many ladies on here with bone mets who have some very positive stories as well and I’m sure they will be able to offer support and experiences to help you deal with this new situation you find yourself in.
Nicky x

Hi Nicky,

I do so understand how you are feeling just now. It brings back my own memories of that moment when I knew I had my first brush with secondaries! Back in 2002 I was due to fly off to Cyprus on holiday and had been having scans like you. It suddenly occurred to me that I shouldnt wait till I got back to find out the results. What if something happened while I was away… So I contacted my oncologist to ask for results over the phone as I was about to go on holiday and needed to know if it was safe. He just said I would be o.k. but they had found the reason for my pain - it was bone mets etc.etc. Go and enjoy your holiday and we will start treatment when you return. It all seems so surreal now. My bone mets it turns out were very extensive to skull, collarbone, ribs, all areas of spine, hips, pelvis etc. What I want to say to you is that this was 8 years ago. The treatment (bisphosphonates) stabilised the disease very quickly and I had very little pain. Did not even need regular pain meds. More recently I won’t pretend pain hasnt been a problem, but have just found out that it is not due to the bone mets, but a soft tissue tumour I have growing alongside my spine. I think for many people with bone mets there is the chance of many years with successful control. If the pain becomes a problem you can have some radiotherapy to the affected areas and this can be quite successful. There are a few members here with bone mets and each will have a different tale to tell but I hope they will be tales of encouragement for you.

Dawn
xx

Hi, I was diagnosed with both bc and bone mets together when my hip spontaneously fractured when I was in my early 40’s (please keep reading this is a ‘good news’ post!) I had a very succesful hip replacement and seven years later I’m pain free and have had many years now of complete remission. I don’t know if hormonal treatments are suitable for you but I had 5 years of hormonal treatments and I’m on my first chemo…which I’ve tolerated really well, it’s Capecitabine (Xeloda) you don’t lose your hair on this chemo. So seven years on from my rather dramatic diagnosis I’m pain free, have all my hair and have not had a day in bed…Love Belinda…xxx

Hi Nicky

I have just finished a course of treatment for bone, lung and liver mets diagnosed last October. I did have quite a lot of discomfort to my back (bone mets are in my spine) but had one dose of radiotherapy and then started on the Bisphosphonate tablets and then 6 doses of carboplatin + Gemcitabine. The good news is I haven’t lost my hair, it has thinned a bit, but that’s okay in comparison to the total hair loss first time around. I had a scan after two cycles and it showed the tumours reducing. I get my scan results this Friday to see how things have gone at the end of this lot of treatment.

I was incredulous when I found out the extent of my secondaries and the treatment that was required AND the prognosis. I know just how you feel. But, I have got through the treatment and every day I gfeel more positive about my long term survival, in spite of everything. There are new things coming along all the time.

So, there is a good chance you will not lose your hair Nicky, fingers crossed. AND most importantly there are many treatments available now and many ladies on this Forum who are responding well. I am sure you will feel better when you get your treatment plan.

Sue xx

Thanks Ladies

You have all made me smile for the first time this evening!

Suddenly life doesn’t feel so bad - THANK YOU!

I will stay in touch, probably with lots more questions…but I really value all of your support,

Enjoy your evening Nicky XXXX

Nicky

I just wanted to say that I’m thinking about you, and hope you get some answers soon.

Hang in there!!

Shenagh xx

Hi Nicky

I was diagnosed with bone mets 2 years ago (2 areas hip and spine). Primary Jan 06, I was getting on with life and really enjoying myself. I remember coming home from a course in London and my GP’s receptionist had left 2 messges on the phone- I knew it was serious.
I felt my life had got a big stop sign on it. I was told I would just have radiotherapy but then the oncologist rang and asked him to have a chat- he put me on Zometa (the bone strenghtening drug)and said it was up to me if I had chemo or not. I decided to have the chemo because I wanted to go back on Herceptin and I couldnt get it without the chemo.

2 years on life is different but I’m really enjoying myself even though my holiday to Tunisia is cancelled tomorrow!- going to Cornwall instead.

By the way, I’m at Clatterbridge - I think it’s a really nice hospital.

Thinking of you

Sue x

Hi Nicky

I was diagnosed with a spine met the same time as bc in Nov 09. My onc has been very reassuring, and thinks I can live a long time with bone mets - I am 51, and she was even willing to say I would likely make it to old age to die of something else. I take everything with a pinch of salt, as we all know the horrible surprises that can be lurking - but I was very encouraged by her optimism. Like you I thought secondaries were an automatic death sentence, and was in a state of compete panic. But now I have just finished chemo and am about to start rads, and she thinks there is a reasonable chance the bone met can be knocked out altogether at this stage.

I expect scottishlass will be along soon to add further reassurance - she has had bone mets for many years, and is an inspiration to all of us.

So try not to panic - there are many good treatments, and my understanding is bone secondaries tend not to be particularly aggressive.

Good luck xx

Hi Nicky,

I do so sympathise with you as I can vividly recall the feelings of panic and despair I felt when bone mets were diagnosed 2 years after my primary bc. However, that was 10 months ago and I can honestly say that, with the support of my medics, BCC and Macmillan, the horizons only got better. That’s not to say that you won’t have treatments to go through and considerable adjustments to make but they can be done and life will not be as bleak as you may well feel it to be at present. I would recommend the ‘Living with Secondary Breast Cancer’ pack from BCC (free) which includes a really good DVD which helps others to understand too. I only came to it quite late on and wished I’d had it from the beginning.All good wishes to you. There’s loads of us here ready to respond when needed who are living with it - note the word ‘living’!

Hi Nicky I was diagnosed with BC and bone mets within 2 weeks of each other in July 2009. I too had problems with my hip and the first treatment I had was radiotherapy to my hip and spine this worked almost immediately on the pain and within weeks I found I could walk again without a limp. I have been on zometa drip every four weeks ever since together with femara and zoladex injections. The traetment I have had has worked really well on my bone mets and you may find that you wont need any chemo that will make you lose your hair. unfortunately I am now on Ec chemo and have lost my hair but that is bacause I now have progression in my liver. I can understand you not wanting to lose yours again I think it is the worst part of any treatments.

Anyway just wanted to say if it is bone mets which you never know it might not be. Things might not be as bad as you imagine them to be right now. My bone mets are improving all the time.

Wishing you well

love Julie x