Concerned about bone mets once again!!!

Hi ladies,

this may seem like de’ja vou to veterans of these forums but once again I’m worried I may have bone mets and am after some advice. I am 36 and was dx with bc in March '07. 25/28 nodes involved, grade 3 stage 3, hormone and HER2 +. Had mastectomy, chemo, rads and 3 Herceptin (long story!).

I was first worried about bone mets in July last year when I had terrible back pain. I had a bone scan which showed no signs of mets. For the past 4 weeks I have suffered from terrible pain in my left hip. The pain gets so bad sometimes that it’s quite debilitating. On occassions it shoots right down my leg and even my foot hurts! When the pain is at its worse it makes me thoroughly miserable to be honest. Its generally worse at night, and varies in severity during the day. Paracetamol doesn’t remotely hit the spot so when I saw my gp on monday he prescribed me some co-codamol. This has helped greatly although its never actually made the pain go away completely.

I have a 6 month check up with my onc on monday. What I’m wondering is what sort of tests or scans should I be asking for?? Would a bog standard xray show mets even if they were quite small? If I had a bone scan 7 months ago which was apparently ‘fine’ would I be able to have another one so soon? Should I be asking for a CT scan??

Although I fear I run the risk of my onc thinking I’m a hypochondriac, I just think I can not ignore this pain and bury my head in the sand. What with the amount of nodes involved, along with a couple of other factors, I’ve always been told that my chances of a recurrance or developing secondaries were very high. Maybe because of this I’m being overly cautious? That said, surely pain that gets so bad that I can be in tears and in agony, can’t be ‘normal’ can it??

My gp says that the onc should request some tests. He says that if these draw a blank then he’ll look into it further and also refer me to a physio. So, going back to my original question, what should I be asking my onc to do, assuming he doesn’t come up with any suggestions himself?

Many thanks as ever,

Kelly
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First kelly

you are absolutely not a hypochondriac, put that right out of your head, if you are in pain you need to have it checked out . I think that your GP is quite reasonable to sugest that and you should be asking for another bone scan, an X ray onkly shows fairly large bone mets so a bone scan would be better. I am on co codamol for bone mets and it works really really well for me if I have any pain it makes it go away completely - so I have a pretty good idea that you are in alot of pain.

i hope it all works out and it turns out to be nothing - but i think the constant message of this forums is the same - check it out and get an answer that is solid and helpful,best for monday,

cathyx

hi kelly

the pain you describe in your hip is very similar to pain i experienced from jan - june last year. I had a standard hip x-ray in jan which came back negative. a routine clinic appt with one of my surgeon’s registrars last march put me off the scent because when i described the pain to her she said that bone mets didn’t go to the legs (!). anyway after the pain got so debilitating that i ended shuffling around on my bottom at times i insisted on more tests and this time i had another hip xray and unfortunately they discovered bone mets to hip - and at the same time reviewed the jan x ray and decided that there was something abnormal about it after all … i was referred for physio in feb-april last year and this didn’t help at all, in fact the exercises they gave me to do probably made it worse.

anyway, without saying what you should/shouldn’t have (cos i’m no expert, obviously) i would say definitely push for SOME sort of test, be it xray, bone scan, ct scan. there are so many different tests it’s all so confusing, isn’t it.

let’s hope that it isn’t sinister.

fingers crossed.
alison x

Hi Kelly,

A hypochondriac you are not! I suspect that when you see your onc on Monday and tell him you have been under the GP for ongoing pain and things are getting worse he will be asking for another bone scan and possibly an MRI. The problem may not be your hip but your spine and some pressure on the nerves there. Certainly my bone mets were originally diagnosed because I had sciatica - much as you are describing. That was 6 years ago and my bone disease is stable. But recently I have had a lot of pain in my hip much as you describe. That they are not putting down to any deterioration in my bone mets, but probably pressure on the nerves and possibly degenerative disease. That sort of pain you may find ibuprofen will deal with better than cocodamol, which didnt work for me either. I think I would go along to your appointment on Monday not expecting a battle with your onc - but be prepared if he doesnt suggest scans to ask for them. I do know just how debilitating it is and hope you get to the bottom of it soon.

dawnhc
xxx

Hi kelly I think we have the same onc and I am pretty sure that if you put it to him as clearly as you have in your post he will refer you at once for the appropriate scans.I was wondering how you were and am so sorry you are still in pain.Pm me if you fancy meeting for lunch-my next appt with onc is 27th Jan.
Love Valxx

Hi Kelly

As others have said please do push for another bone scan…things can change so quickly in cancerworld. I’m sure your onc won’t think you a hypochondriac…you are a high risk patient and any good onc will take your symptoms seriously.

very best wishes

Jane

Hi Kelly, sounds like a sciatica-type pain which is usually something affecting a nerve. Many things can cause this including bone mets, which do indeed often affect the legs (femur) and hip. Go for that bone scan (a tracer scan, not a bone density scan, but you mention having had one already so I guess you know about the difference between these) and I hope there’s nothing nasty by way of results. Also that you can get good control for your pain. And remember, even if it is bone mets, these are treatable, mine were dx in August 2006 and I am doing well.

Hi Kelly,

I would definately ask for a bone scan. If only to get peace of mind. As a high risk patient you can’t be thought of as a hypochondriac! Any change however small should be checked out. Hope it will turn out to be a trapped nerve or something like that, but do insist on getting it checked

Peggy

The pain you are experiencing does sound similar to mine before i was diagnosed with bone mets. Mine showed up on my bone scan and then the onc confirmed it by sending me for immediate xrays. I was then put onto pamidronate which has kept it all stable in my bones for almost 2 years

Definately ask for a bone scan. If anything if it is all clear it will put your mind at rest over mets

Jools

Hi ladies,

thank you so much for your swift responses, as ever I am truly grateful. I think I shall definately request another bone scan if my onc doesn’t suggest it. When I was first diagnosed I had a ct scan which showed ‘hot spots’ on my spine. A couple of weeks later I was sent for a bone scan ‘as a baseline’ my onc said. This showed an increased uptake of dye in certain areas of my spine but for some reason was discounted and no treatment was suggested, just to monitor the situation.

I’m only taking the co-codamol at night at the mo as I don’t want to become relient on it to get me through the day. Unfortunately I am unable to take anti-inflammatory’s such as Ibuprofen as they interfere with the medication I’m on for heart failure, thanks for the suggestion though Dawn.

My philosophy for this I think shall be ‘expect the worse but hope for the best’. Its not long now 'til monday and last time my onc sent me for a bone scan the appt came through v.quickly. It is very reasurring to hear from people who have been living with bone mets for many years and I appreciate you sharing your experiences with me.

I’ll be sure to let you know how I get on, thanks again,

Take care all,

Kelly
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Hi Kelly

Sorry only just caught up with this thread. I echo wot everyone else has said, and ask for a bone scan and maybe mri scan too, wotever you can get to find out what is causing you so much pain. You are certainly not a hypochondriac either, and any niggle or pain we get we automatically think the worst, so you need to find out to give you peace of mind if nothing else.

Take care honey and let us know how u get on on Monday.

Lots of love
Dawn
xxx

PS. Did u get the pics of Bella xxx

hi princess 18

im sorry your in so much pain, but i have just been through a similiar experience and the onc was the one demanding i have bone scan. i do have mets in the spine in 3 places and only had slight pain on occasions but i recently thought i was well enough to start a new job, and it involved lifting, and my back went, i too was in so much pain,(lower back) i tried to convince myself it was a pulled muscle but he is telling me he thinks its my mets. the bone scan will show whos right, im not usually a rightous person, but i hope im right on this occasion, because i dont know how i will cope with that kind of pain in the future if it is my mets. i found when i tried to stand i would get terrific pain down my buttock and leg and it made me cry out, and i dreaded walking. also i couldnt move in bed and had to grip the sheets to get up. unfortunetly the job as had to go, because hes adviced against lifting anything over 10kg, just when i thought id done so well and got a new job. ive tried for DVL before, but if i cant work i will try again, hope you sort this out, and your onc expects you to tell him your needs, remember they cant read our minds( good job sometimes)

take care anyone else with bone mets. god bless x

Hi

As the others have said please please please do get it checked out and don’t take no for an answer. This is your body your life and you have to push for checkups , examinations when needed. My onc told me that for at least 2 yrs after dx she expects a lot of calls for concerns/problems even though they may just be red herrings. see me ct scan results thread for one.

don’t delay and make sure you get it checked out.

take care
sukes

Hi Kelly

I too am high risk, loads of nodes + large tumour, I am on 6 monthly checks however my onc has always told me that if I get any symptons or concerns then i am to go her to clinic immed and bypass GP and BS. I am sure your Onc will be the same, when I had to have scans prior to recon I had MRI to whole spine, which included collarbone, ribs and hips.

Hope its nothing sinister.

Debbie x

Hi Kelly

I am having a de ja vu moment here!!! Do you remember we chatted back in the summer about rib pains at the same time and I think we both had scans to say no problems, well you are not going to believe this but I too having been suffering from left hip pains for the last month or so!!! I did see my surgeon before Xmas and he did assure me that everything was ok but I am off to see my chiropractor next week to see if he can help.

I have been getting a pain at the bottom of my back / bum area which then seems to sometimes hurt all around my groin / top of my leg (it sometimes feels like my knicker elastic is too tight if you know what I mean!!!) I have been having sleepless nights worrying about it as it niggles me at sometime each day but not all the time, somedays I persuade myself that it is back problems (which I do suffer from) but of course, alot of the time I think the worst especially as it aches sometimes.

Anyway, I will tell you what my chiropractor thinks next week, especially as he sort of diagnosed my initial bc (long story, but I had continual shoulder pain which wouldn’t shift and he was going to send me for further tests when I found the lump, I haven’t had a pain in my shoulder since!)

Take care

Mx

Hi ladies,

thanks once again for your replies. The pain was pretty horrendous yesterday and yet is almost non-existent today! Its more of a dull ache rather than the severe pain I was in yesterday.

Catflap - I certainly do remember that we were going through similar probs last year at the same time. I hope the chiropractor gets you sorted and your pain is nothing sinister. I am not too hopeful abut myself but you never know!!

Take care all and thanks again,

Kelly
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P.S. Dawn (dm1968) - I’ve emailed you xxx

Hi Kelly,

I think we were diagnosed with primaries around the same time… and ive always followed your progress. What I always remember about you was your complete supportiveness of other people.

I am thinking of you today and hope the scan, and the results, go well for you.

Polly
xx

Hi Polly,

thank you so much for your kind words and for thinking of me. I’ll be sure to let you know how I get on. How are you doing??

Take care,

Kelly
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Hi ladies,

just to let you know I have seen my onc and he is sending me for an urgent CT scan and bone scan. He was lovely as ever, although I did sort of get the feeling that he thought I was being a bit paranoid! He feels that the pain could be arthritis, all the same I’m glad he’s sending me for the scans. And so the waiting begins…I have an appt to see him again in 6 weeks for the results. Keeping everything crossed already!

Take care all,

Kelly
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Hi Kelly

I am so sorry to hear that you are having problems once again, you know where I am if you want a rant !!! Please make sure you push this, you need to. You take care and please let me know how you get on.

Love and best wishes

Claire xx