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Concerned about bone mets once again!!!

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Re: Concerned about bone mets once again!!!

Hi Val & Pauline,

thanks for thinking of me.

Val - I hope you're getting on ok and you're leg is healing well.

Pauline - Good luck for your MRI next week, I'll be thinking of you.

The waiting game is pants but its one we're all too familiar with isn't it!

Thanks again for your thoughts,

Take care,

Kelly
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Re: Concerned about bone mets once again!!!

Hi Kelly,
I was wondering how you were getting on... not long to wait now then. I have my MRI on Wednesday 4th and then like you lots of waiting after that! If only they could give out the results straight away. My friend's daughter has regular MRI scans and get the results in clinic straight after... seems a much better system to me!
Take care and try to relax
Pauline x

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Re: Concerned about bone mets once again!!!

Thinking of you kelly-how slowly the time passes when you are waiting.
Love Valx

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Re: Concerned about bone mets once again!!!

Hi teacup,

thanks for thinking of me. I had the dreaded MRI which, thankfully, was nowhere near as bad as I had imagined it to be. Currently playing the waiting game, I get my scan results on monday. Mine is the first appt of the day so at least I won't have long to wait!

I'll be sure to let you know how I get on, although you're bound to hear from me before then when I start stressing as the appt day approaches!

Take care,

Kelly
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Re: Concerned about bone mets once again!!!

Hi Kelly, Just thinking of you and hoping you have had some good news lately. Best wishes, x

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Re: Concerned about bone mets once again!!!

Hi all,

well I had my ct and now I've gotta go for an MRI tomorrow! Not sure whether the ct showed anything but I know the bone scan prior to that did.

Obviously dreading the results but right now I'm just worried about the scan as I'm quite claustrophobic! In fact I've just started a thread inviting anyone who can to share their MRI scan experiences with me.

I am grateful that my onc is being very thorough, just need to get tomorrow out of the way!

Take care,

Kelly
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Re: Concerned about bone mets once again!!!

Hi Cathy, Lesley & teacup,

thank you so much for your responses. I'm very grateful to you for sharing your experiences of bone mets and pain with me. Its reassuring to hear that your treatments are helping with the pain.

Many thanks once again, I'll be sure to keep you posted.

Take care,

Kelly
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Re: Concerned about bone mets once again!!!

Thanks teacup - yes, it was a huge, huge shock before Christmas but I think I'm slowly coming to terms with it now, having been pretty numb for a couple of weeks to start with, but am definitely feeling the benefits of the pamidronate now so things are looking up I hope ...

Lesley x

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Re: Concerned about bone mets once again!!!

Hi Kelly, I have my fingers crossed for you that it will be good news for you. Lesley, so sorry to hear that you had the bad news of a bc and met diagnosis at the same time. That is such a blow. Wishing you the best of luck with your treatment. Hope you hear news soon Kelly. x

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Re: Concerned about bone mets once again!!!

Hi Kelly

I was dx'ed with bone mets & bc just before Xmas having had agonising back pain for three months. It got a lot better after my first Pamidronate infusion, that then wore off after about three weeks and now I've had a second one, it's feeling reasonably ok again. And yes, I definitely have really bad days and other days where I hardly have any pain whatsoever, I think that's pretty normal.

Hope your result comes through soon and that it turns out to be something unrelated.

Lesley x

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Re: Concerned about bone mets once again!!!

Oh kelly - its awfulhaving to wait - really terrible - i hope you get your answers soon...you should not be in pain like this.

I think everyones experience is totally different with bone mets- I had not idea i had them and hardly had any pain, but others have had alot of pain, it depends where they are and whether they are pressing on nerves etc., so you could get alot of different answers. If it is confirmed bisophonates will help alot - very quickly. Now I get some aches and pains when my infusion is coming up.

hope u get answers soon,
cathyx

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Re: Concerned about bone mets once again!!!

Hi all,

well I'm getting really nervous now, dreading the phone ringing to say something else has been found on my ct. Then again I'm also dreading the phone not ringing cause then I know it means I'll have to go for an mri, the thought of which terrifies me!

So, once again I find myself playing the waiting game. Yesterday the pain in my hip and lower spine was unbearable and I spent much of the day in tears. Today however it is much better and just a distant ache. This is all very confusing, would pain from bone mets differ in severity from one day to the next?

Take care all and thanks for reading,

Kelly
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Re: Concerned about bone mets once again!!!

Hi Maria,

thanks for your message, I'm sorry to hear that the results of your mri were not good. I spoke to my onc's sec yesterday and she said he is happy to wait and see if the ct picks anything up before booking me in for an mri. I'm terribly claustrophobic you see and only want it if its absolutely necessary as it terrifies me.

I had my ct this morning. If it's still not clear what the problem is then of course I shall go for the mri but they are hoping that the ct will do the job. Me too!!! Never thought I'd be saying that I want something to be found on the ct but this time I am! I'll be sure to keep you posted,

Thanks again,

Take care,

Kelly
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Re: Concerned about bone mets once again!!!

Hi Kelly

I had a bone scan last month which was clear but unfortunately for me the MRI wasn't (i had a ct prior to bone scan which was suspicious hence bone and MRI booked). What i am saying is i don't know how reliable bone scans are - the MRI will show if there is something there and what it is.

I know its scary waiting for results - phone your BC nurse and tell her how stressed you are to see if they can bring the MRI forward. If they are scanning from neck to pelvis they have to book you in for 1.5 hrs - tell them you are willing to do it in 3 different slots - i did that and ended up getting it brought forward by 10days. (but the chance you take is visiting hospital on 3 seperate occasions!)

Best of luck Kelly - hang in there - will keep an eye on this thread to see how you are doing

Maria x

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Re: Concerned about bone mets once again!!!

Hi Nicky,

thank you so much for your response and support, I very much appreciate it. Got my ct tomorrow and just waiting at the mo to hear when I'll be having my mri. Starting to think the worst to be honest with you. OH is very optimistic but I prefer to be realistic!

Thanks again and I'll be sure to keep you posted,

Take care,

Kelly
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Re: Concerned about bone mets once again!!!

Hi Kelly
So sorry you've had this worrying message from the sec. Due to the urgency of this it is probable they have seen a hot spot and want to check out the rest of you. I don't mean this to be blunt but I guess you might be thinking the same? Good luck with the MRI and hope it shows nothing else up. You then need to find out what happens from here and we are a great bunch to ask. The forums, if you can track all the previous comments down, should give you an idea of any questions to ask when you see your onc and make sure you have someone with you to ask them or jot down answers as you may not take anything in. Hope things aren't too bad but it is a worrying time - we all know about it - so feel free to moan or rant on here.
Nicky x

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Re: Concerned about bone mets once again!!!

Hi all,

well if I wasn't concerned before then I certainly am now!!! After I had my bone scan last weds the radiographer asked the usual question about when was my next appt. I said I was getting the results in a few weeks as I was waiting on a ct scan. She then said that I may get a call sooner than that! I tried not to read too much into it at the time.

Well, earlier today I had a call from me onc's secretary saying that the results of my bone scan were in and I need to go for an urgent mri!!! I told her that I already have a ct booked for friday and she said that he knew that but still needed the mri. After panicking for ages I called the bcc helpline and then rang my onc's sec back. I knew she couldn't tell me much but I just wanted to know whats what. She said that there is an area on my lumbar spine that needs further investigation but that there's nothing 'obvious'. Not really sure what to make of that to be honest!

Properly stressing now!!!!

Kelly
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Re: Concerned about bone mets once again!!!

Glad you are going to get some answers Kelly though the wait is always horrendous.Love Valxx

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Re: Concerned about bone mets once again!!!

Thanks for that Claire, I hope you're doing ok.

I have my bone scan this afternoon, and so the waiting will begin!

Take care all,

Kelly
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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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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Re: Concerned about bone mets once again!!!

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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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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.

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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Re: Concerned about bone mets once again!!!

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

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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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