Reading about ladies on here who have been diagnosed with bone mets, a thought occurred to me.
Because many of us are on hormone therapy which causes many aches and pains, how are we to know whether we should flag them up? For instance, I have a painful neck and hip and aching knees. I had the pain in the neck(!) and hip before diagnosis and although there was no apparent lymph node involvement or vascular invasion, how would I know if these problems were in fact caused by bc? Would it be a different sort of pain? Would it get progressively worse?
I have mentioned them in passing at appointments but no-one seemed concerned and so I have just dismissed them as age related, exacerbated by low oestrogen, which I do believe they are. I daresay if I made a fuss, they may be investigated but I don’t want to be paranoid about it.
My Mum’s bc was only diagnosed when she went to the doctor with a painful shoulder. He examined her and found the breast lump. The pain was, indeed, caused by spread to her bones.
I expect many women with aches and pains and who are on hormone therapy will feel the same as I do. Have you done anything about it?
Ann I think this is a very difficult issue. I hadn’t really noticed the pain in my spine until after I was dx with a bone met - I just thought it was general lower back pain that I have been prone to for years. It wasn’t persistent or increasing in intensity. I think it is almost impossible to tell the difference between a bone met and arthritis or any other sort of pain - particularly in the spine and hips - places where you expect some wear and tear as you get older. I think perhaps rib pain would be a more obvious alarm bell. I’m not sure what the precise threshold is for being scanned at dx - I assume it is anyone with any lymph node involvement. I am being treated privately and seem to be scanned all the time - I imagine it is different on the NHS though.
All I can say is if you are really worried you should ask for a scan, but I suspect you might have to pay for it yourself unless there is a clinical reason to suspect bone mets.
I went to GP in mid May after having back pain for a couple of months, she sent me for a lumbar Xray and 2 weeks later the results were in and the receptionist said they were ok and that it had came back as “stable”…strange wording I tought…but never thought too much about it… I was at The Onc last week and told him about the xray, he reviewed the results and told me that I was diagnosed with calcifications and lesions similar to that of arthritis, he said I am too young for that and today I went for a bone scan!! So I’m back to the waiting game…I think it’s a personal decision if/when you go to the Doctors but given our history I suppose it makes sense to get it checked…I cannot fault the onc for bone scan, just threw me a bit after thinking it was ok…so now I’m hoping it’s arthritis??? never thought I’d say that!!..just feel like I’ve had so many test lately…but I suppose that’s par for the course with us now…Hope all is well with you Anne whatever you decide…
I think 6 months ago I would have agreed with the thinking that every ache and joint pain was attributed to the Tamoxifen then Aromasin that I was taking. In fact I ignored my aches for too long and then when I did go to the doctor I was diagnosed with bone mets in my hip and ‘hotspots’ in my neck, shoulder, spine and ribs.
I don’t want to alarm you in any way as it is statistically more likely to NOT be bone mets. However if in doubt do get it checked out. I was suspicious of my hip (that is the one with extensive mets the others are tiny little areas.)because it was far more painful on one side than the other and I assume low oestrogen would be more symmetrical!
It is a difficult dilemma, because if you go once and find out it’s nothing, you might be deterred from going again when it could be something. If you had hip and neck pain before it is probably more likely to be made worse by the hormones you’re taking.
I guess I’m advising just trust your instincts and if something has hurt more than usual for a week, go and see your GP.
It depends, there are different types of bone scan, the ones I had to diagnose secondaries, were in the Nuclear Medicine department. I had to go in the morning to have a radio active dye injected in my arm. I then went back that afternoon, a machine is above you to take x-rays, I think it takes 4 different views from above and 4 from underneath. it is quite relaxing, but takes about 20 mins- half an hour. The picture it gives is a whole skeleton, with dark areas where the ‘density’ is suspicious, it could be due to bone mets or arthritis.
I also had a dexa scan last year, that is similar, but without the radioactive dye.
fiona - the thing about a nuclear medicine bone scan is that it will show areas of high cell activity, so may pick up things that aren’t cancer. So you are really dependent on the judgement of the radiologist who interprets the scan, and may well need an mri or xray to confirm bone mets.
Thanks for the info…I was wondering what the difference would look like on the scan? I’ve had the Xray so I suppose if mets were really suspected then an mri would be the next port of call…The onc was very doubtful about arthritis, he got me this scan within the week and results are supposed to be next Tuesday but I go on holiday in 2 weeks so I am postponing my appointment with him till I get back, I don’t want bad news before I fly off for my long awaited and desperately needed holiday…bit of a dilema coming to this decision, but If I have mets there isn’t anything I can do about it now…so fingers crossed it’s arthritis!!
Sorry to hear you’ve got this worry hanging over you. i’ve got no experience of this and unfortunately no advice to give, i just wanted to say i’m wishing all the best for you in terms of the results and i hope you manage a fantastic holiday
The bone scan just shows hot spots - nothing structural at all, so arthritis or an old injury would look the same as a met. I have 5 or 6 hot spots, but only one has been diagnosed at a met. An xray would show the bone damage from an established met, but I guess possibly not from a very new one? I agree that I would expect an MRI to be the most definitive - in my case it was only after seeing an MRI that the onc definitely called it a met.
Go and enjoy your holiday - if in the worst case it is a bone met, nothing is going to change in the next few weeks, and you could start on biophosphates as soon as you get back. Good luck - let us know how you get on.
Hi Everyone, Just been reading all the posts and thought I’d also add to them. I’ve got three hotspots on my spine and am on Bondronat. The onc never seems worried about them and unless I mention it, he doesn’t either. I’ve just had the chemo stopped because it’s not showing any significant improvement (Tax) and now I’m on a daily tablet of Arimidex which apparently I’m extremely receptive too. Finty, I’m going to PM you to see if you know anything about them. (I’m always getting advice from you, you’ll be getting fed up with me)
Otherwise, hope everyone is well today, enjoy the sun.
No, I don’t mind answering any questions. I was diagosed Dec 2006, with a 3cm lump and 9 lymph nodes affected. I had 8 lots of chemo first, a WLE and 33 rads on my breast and neck, I found out that I had bone mets April of this year.
I have been wondering about this lately. I was diagnosed June 2008 WLE 1/16 nodes, after 3xfec 3xtax, rads and 18 herceptin I am treatment free, however, I am now experiencing aches and pains down my left side especially after sleeping but not on my right side. I have put this down to a new mattress I got about a month ago, but I do get a bit ‘paranoid’ that it may be something else. I have not mentioned it to anybody but it does make me wonder how would I know as like on of the ladies has mentioned if I went and it was luckily nothing would that deter me from going back again.
Nicky - Thanks for your reply. It is helpful to know people’s history. I have read some of your posts and know you are having a tough time. I do so wish you and your family luck. Hopefully, the medics will soon be able to sort out your hip and that the Letrozole will help the rest. I am on Letrozole but not for the same reasons.
Hi Debbie - That is exactly what I mean. I didn’t think it would just be me. There must be so many of us in this position, not knowing if it is a side-effect of something or other, or a real problem. This whole thing makes us so paranoid, when we used not to be.
Im so pleased you asked this question. I had my ovaries removed a year ago and have been on tamoxifen for just over 2 years. You just get paranoid with every ache and , but at the same time i think its probably due to lack of oestrogen. Im having trouble with one of my knees at the moment, it really hurts every time i bend them to a squat position, im assuming its oestrigen related, but you just never know do you…
Just to possibly put your mind at ease, I had really bad pains in my knees when on any hormone treatment. I have bone mets in a few places, but not my knees. The oncologist said that it’s rare there, it is most likely to appear in your bones in the ‘central part of the body’ i.e. ribs, pelvis and spine and highly unlikely in lower limbs (which I guess is where your knee is classed as being!)
I am no expert, but that’s what I was told! Hope it puts your mind at ease!
Hi Ann and all
I have also been thinking the same lately. I’ve been on Tamoxifen for a couple of months now and if I sit/lie still for too long I stiffen up a lot and hobble around. It loosens when I keep moving though, so I doubt very much it is bone mets, but you can’t help but wonder. I also get achy elbows if I over-use my arms (particularly my surgery arm, but both), and this has been the case since before I started on the Tamox.
I briefly mentioned it to the oncologisy registrar last week, but she just dismissed it as aches and pains due to Tamoxifen, and when I asked what I should look out for, she wouldn’t tell me in case I started imagining symptoms! Gee, thanks for the help there… *sigh*
