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Bone scan this week

35 REPLIES 35

Re: Bone scan this week

Oh Alex what a pain!! Yes the waiting is dreadful. I do hope the 'inconclusive' is a good sign and that the MRI shows nothing cancer related.

Gilly sorry about the abbreviations - I try to be careful not to use too many but that one slipped thru' and yes you guessed right it is abbrev. for diagnosis. I am afraid I have no time for the 'eat correctly etc' brigade. I was told initially my dx was unlikely to be cancer because I had done this that and the other all like age I had kids, breast feeding, diet, non-smoking, non-drinking, good weight etc. and I end up with one of the more aggressive types of breast cancer! I get on with my life as I want to live and every now and then cancer interrupts it and I have to make adjustments. That is how life is for me. But I certainly am not going to beat myself up about any of it. I think I can honestly say I am happy with my life. Of course I would have preferred not to have had cancer as part of it but I am not going to let it ruin what I have.

Val it's nice to be in contact with you again and I have pm'd you 🙂

Dawn
xx

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Re: Bone scan this week

Had the results of my bone scan but they are inconclusive. I was shown the scan and it looked like some sort of 'star burst' of white against the rest of spine. Oncologist said it could be any number of things - not necessarily cancer, so I'm to have an MRI soon. Don't you just hate waiting...?

AlexG

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Re: Bone scan this week

Dawn and Val,

Thank you so much for your kind words and support. It is all just a nightmare isn't it and 'yes' I agree it is amazing that we welcome 'normal' deterioration given to us as the reason for the aches and pains.

By the way does dx stand for diagnosis?

All I know is they say do not get stressed, eat correctly, etc. I even get to the stage when I say it didn't help Linda McCartney did it and get out my fish finger and mayonnaise roll.

I actually went to a Cancer Retreat for a week that promoted healthy eating which I feel I have always anyway but just cannot afford organic all the time. It was intense and they were all very kind.

Anyway I met a lady who had C return and she said she had been there before and maybe it has returned, because she started to eat bacon butties that were her favourite and had stopped sticking to the recommended diet. Why do we do this to oursleves?

Anyway just so fed up with the numbed feeling of suspense and fear but hopefully as time goes on the adjustment will take place again.

Love xxx

Re: Bone scan this week

Hi Gilly, I am glad that you have come onto the site again. I am sorry that it scared you last time. I, like Dawn, have bone mets and was diagnosed with that in 1999. I am still keeping well and thanks to the medication have been free from pain for quite some time now. When I was first diagnosed I was scared too, but I have gone on to enjoy life again. I too am on biphosphonates which help to strengthen the bones...but I take them by tablet form now, every day. Perhaps you don not have bone mets but you are doing the right thing by getting your bone scan done. If we can help in any way just ask.
Dawn, lovely to see you posting again. I haven't been on all the forums recently. If you have time could you PM me to let me know how things are going? LOve to you all, Val

Re: Bone scan this week

Hi Gilly,

I am sorry to hear you have all the anxiety of waiting for the bone scan. I can understand how your mind wants to tell you it must be related to your bone problems but how wise you are to check this out. Maybe it will be related to those problems - if a vertebrae is compressed it could be causing sciatic like pains. But then again you know you have had bc and can't afford to be complacent. If it is any help my bc is HER2+++ (although that wasn't known at my first dx in 1990. It was only discovered when I got dx with 2ndaries in 2002 - I had extensive bone mets that had spread to skull, ribs, collarbone, all of spine, hips & pelvis. And I knew nothing about this until I got sciatica one day!! Since that dx I have had 6 years virtually pain free. My treatment has been bisphosphonate and herceptin. It is only the past 18 mths that pain has become a problem so I am in the process of having some radiotherapy to the lower spine as I have a tumour growing alongside it. If the bone scan shows you have got secondaries in your spine they will probably offer you bisphosphonates - this is the norm. Keeping everything crossed for you that the pain is 'only' due to deterioration of problems you already have. Bet there was a time when you would have dreaded hearing that but it is amazing what we will settle for that isn't bc.

Dawn
xx

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Re: Bone scan this week

Sorry I was so full of me that I forget to say to Janet how pleased I am for her. xxx

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Re: Bone scan this week

I have not posted for ages and in fact the last time I posted was when I thought I had BC and was waiting for the appointemnt at the One Stop Shop. I scared myself looking on this site and others and vowed never to come on one again!

Well I was diagnosed in June 2007 and it resulted in a Wide Local Excision, Lymph Nodes removed, Chemo, Radio and 18 sessions of Herception as I am HER2 positive. Treatment finished in Feb 2009.

Here I am to eat humble pie and ask for your support. I am now waiting to hear when a bone scan appointment is arranged for me.

So I am into being so scared and thinking this is the end as I am HER2 positive being the more aggressive form so I am told.

Making my husband's life hell and finding it is hard to talk to my 87 year old Mum as though I have nothing on my mind. She loves telling me about who has died, etc. Bless her she is lovely and I don't want to worry her as well as myself.

I have an existing back problem and was told in 2006 that I was Osteopenic and should have another test around now.

I also have wear and tear of the spine, scolisis, etc. So I know back pain but this year having both retired we have worked physically hard on our cottage. It has helped me focus and not be thinking BC all the time.

Well I went for my check up last Thursday. When asked how I was I said OK but 'real' backache and like sciatica been working so hard. Thinking I was going to get a pat of the back!

You guessed it ... He said 'God forbid it isn't Bone Cancer but this will have to be investigated, etc. I said perhaps I have Osteoporosis now and he just said 'that doesn't cause pain in itself!

That has really stopped me dead in my tracks. Scared stiff and thinking it can't be it has to be all this hard work - but - the voice in my head is saying 'yes' it can you never guessed you had BC because you felt so well.

So you lovely ladies how do you keep yourself sane? Everything aches now and my back ache feels even worse and it has also travelled into my thumb!!!

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Re: Bone scan this week

Fantastic news Janet so pleased for you what a relief as Monica says - go celebrate!!

Anne xx

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Re: Bone scan this week

Hi caro111 and all

What you said about aching all over not being bone mets is exactly what I was told at the hospital this afternoon. I'm not on hormone therapy (am triple negative) but it is most likely the chemo that has caused it. I've to monitor it and see how it goes and see the consultant end of March. So I can stop worrying for a while! Relief is a great feeling, you must be feeling a great sense of it Janet!

Dae x

Re: Bone scan this week

Janet BRILLIENT NEWS!!!!!!!!!!!!!!!! i am so pleased for you, luv pauline xxx

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Re: Bone scan this week

Excellent news Janet!!!

Dae, I doubt you'd be aching all over your body if it was bone mets; that's just not how it happens. It most definitely sounds like a SE from the chemo or one of the hormone drugs, which is very common. I'd still mention it to your doctor though, as they might be able to prescribe something to help.

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Re: Bone scan this week

Brilliant news Janet - go celebrate!!
love, Monica xx

Re: Bone scan this week

So pleased to hear your news Janet. Hope the physio will give you some relief from the pain but I bet it will never seem as bad now you know it isn't the worst.

Dawn
xx

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Re: Bone scan this week

Hi everyone,

I finally got my results today and the scan was clear!!!! Just showed some degenerative changes in my neck which may be due to having injured my neck through lifting patients in my nursing days in my 20s. I have a physio appt next week so hopefully this will sort out the aching and clicking bones. Hope those of you who are also waiting for results get good news too.
Janet (soapsuds)

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Re: Bone scan this week

Are you having any hormone treatment like Tamoxifen, Letrozole or Armidex? There are reports of joint pain when taking these drugs, so that may be the cause of your joint pains. Don't be afraid to mention any pains to your oncologist - they're not mind-readers! I hope you get some satisfactory answers.

Good luck,
AlexG

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Re: Bone scan this week

Hi all,

I've read all your posts. I would like a bone scan but was told it wasn't necessary. However since then, having finished chemo and rads, I am having really bad joint pains, every joint, in fact my whole body seems to ache, it's worse at night and I have to take strong (prescribed) painkillers just to get out of bed in the morning! I know that joint pain can be caused by the chemo drugs (I was on Tax) but I thought that was during chemo, not weeks afterwards. I am at the hospital tomorrow about the joints and will ask for a bone scan, don't know what to do if they refuse. Any advice?

Thanks,

Dae x

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Re: Bone scan this week

Thank you all. This site is brilliant!

AlexG

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Re: Bone scan this week

Good luck with yours too Dawn

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Re: Bone scan this week

hi AlexG, I had a bone scan two weeks ago, havnt got the results yet, but it was OK, had the injection in my foot, then went away for three hours, like Dawn said, just avoid young children but the scan itself was OK, gets close to your face, but not like MRI, and took about 25 minutes. Its the waiting again thats the worse bit, Im supposed to phone the GP but just putting it off.
Hope it all goes well for you
Shirley
x

Re: Bone scan this week

Hi AlexG,

I am having a bonescan this Friday and going by the procedure at my hospital there will be a radioactive injection first then you are sent off for 2-3 hours during which time you are told to drink about 6 cups of fluid (doesnt have to be water). You will be asked to empty your bladder before getting on the scanbed. You lie flat and the scanner moves over your body - at my hospital I would described it as a giant polo. Sometimes the scanner is quite close to your body - especially when it gets to your face, but it doesnt touch at any time. I think if it is your whole body it takes about 40mins. If your bladder has become too full during this time they may at the end ask you to empty it again and then rescan that area. You have to avoid contact with babies and young children, and pregnant women during the 2-3hrs before the scan and for 24hrs after. I have probably forgotten something but I am sure others will spot any omissions 🙂

Dawn
xx

Re: Bone scan this week

Hi AlexG

It's all pretty straight forward. You will have an injection, then you have to wait - I think it's about 3 hours - before the scan. I can't remember if you have to drink or not. The scan takes about 20 minutes - it's not as claustrophobic as an MRI. In my case, the radiologist asked quite a lot of questions as some things showed up on the scan, so got a bit of an indication of the results to come. I got the results 3 or 4 days later - but this was privately, so that may be quicker than usual.

Good luck - the waiting is horrible, but I hope you get good news.

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Re: Bone scan this week

Hi everyone,

I am due to have a bone scan in a couple of weeks and would really like to know what to expect. I had an information leaflet which warned me about radioactive injections, drinking lots of fluid, etc. but I would still like to know the 'nitty gritty'. Any help, please?

AlexG

Re: Bone scan this week

janet, they wont tell you over the phone so don't panic. They new i was in a right state when i had to go for results, they spoke to me on the phone in the morning but still made me go in for appointment in afternoon. I hope this helps ease your mind, i know you wont stop worrying though. I have everything crossed for you, for good news, let us know how you go on tomorrow, luv Pauline xxx

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Re: Bone scan this week

hi janet
just wanted to say hope you hear tomorrow and its good results, i totally know what you are going through waiting is just torture
galen x

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Re: Bone scan this week

Could not find out the result yesterday becuase medical secretary said that one of the oncology team would call me. Waited all day and heard nothing. Went to work today dreading the news, still hadn't heard by lunchtime so I rang again and discovered that they had the wrong phone number for me. I am now really worried as I have an appt to see someone tomorrow morning, does this mean it's bad news as I would have expected to be told over the phone if it was nothing to worry about?
Janet (Soapsuds)

Re: Bone scan this week

Hi janet, just wanted to add, i had a pain in my arm for 8 weeks, had xray, they told me it was 99% mets.......went for bone scan, it showed nothing and guess what the pain has gone. I total understand how u feel about waiting for results, its all i seemed to do this last few months. now having MRI on arm and yes u guessed it...have to wait for results again. Must say they were baffled when the bone scan showed nothing, thats why im having the MRI but they have all changed there tune now and are not expecting the scan to show anything.
Good luck with your scan results, hope you find something out tomorrow, let us know.

Hi caro my old mate fancy seeing u on this thread too, we do get about dont we lol
Luv Pauline xxx

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Re: Bone scan this week

Hi Janet, I can totally empathise with what you're going through. I had lower back pain for 5 months before I plucked up the courage to have a bone scan 4 weeks ago; I was terrified of the results, but the scan came back clear! I can't tell you what a relief it was, and it's also made me determined to enjoy life to the full. Oh, and since then my back pain has more or less disappeared! Good luck, I'm keeping my fingers crossed for you. Caro x

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Re: Bone scan this week

Tried ringing the BC nurse yesterday, but took me a while to get the right tel number as the dept has relocated to a diffierent hospital since I was last in contact with her. Left a message on the number I was given which was the breast unit secretary's who called me back later to say the nurse had left for the day and I should wait to speak to my consultant! So not a lot of help really, so will just have to stick it out a bit longer and hope I can speak to someone on Monday. Janet (Soapsuds)

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Re: Bone scan this week

Hi Janet

I do hope your resuts are good - I know the waiting is horrible. I'm due scans in March and getting stressed about the waiting already!!!

Do hope it's good news and like Monica suggest bc nurse may well have the results on screen - or ask her to contact you when they do.

Good luck Anne xx

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Re: Bone scan this week

Good luck Janet
had similar situation myself in November - waiting is so rotten isn't it?
I was lucky and scan was clear - hope very much that yours is too
monica xx
ps - rang my bc nurse 2 days after scan and she had the results on screen, might be worth a try...

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Re: Bone scan this week

Hi again,
Thanks for your posts in reply to my one about my scan. I had the scan today which wasn't too bad, but now the worst bit is waiting for the results, although the radiographer said I should hear by next week.
Janet (Soapsuds)

Re: Bone scan this week

Hi,

Another bone mets at bc diagnosis here. I was diagnosed in July 07 and had chemo,mx,anc and rads for tumour, followed by zoladex and arimidex. In Sept 08 I started on zometa - bisphosphonate drug to strengthen bones and my bone mets are currently stable. They don't give me any pain and I am hoping that will continue for a long time.

Dawn, Belinda, Scottishlass plus others have always been there to provide me with a source of inspiration and hope that I can live for years and years with bone mets. I feel really well now and have just booked holiday number 3 for this year !!

It's good that your GP is doing a quick referral, even if it seems frightening at the time and remember it can always be wear and tear or a side effect of earlier treatment. Indeed my mum was diagnosed over 7 yrs ago and has had to have several bone scans over the years but so far they are still showing wear and tear.

Hope all goes well.

Liz

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Re: Bone scan this week

Hi,

Another bc and bone mets dx together here! I'm only new to this illness, dx in June, 09. After 6 months of chemo, 4 of which also with zometa (one of the bisphosphonate drugs, I think), my onc was very optimistic about the future. He claimed that because I've responded well to treatment and because of my age (was 24 when dx), it's very likely I can live for another 30 or 40 years!

Belinda - it's very encouraging to know that you are in your 7th year. It gives me hope that I can enjoy life for a bit longer.

Soapsuds - My parents have never accepted my diagnosis either. We always have arguments, too. It's frustrating that they just don't understand why we can't do as much as before.

I agree with dawn, if it concerns you, better get it checked out. It will either put your mind at rest or get it sorted out asap.

Hope the scan goes well and it's not what you feared.

take care

Re: Bone scan this week

Hi there, I hope all will be well for you. Just to add to Dawn's post, I have been living well with bone mets, I'm in my 7th year, I have no pain, use no painkillers. I was a bad case too as I was diagnosed (with bc and bone mets together) when my hip fractured in my early 40's. But I have a new hip (well it's 7 years old now) which feels completely normal. Good Luck, I hope you are reassured by some good scan results..xx..

Re: Bone scan this week

Soapsuds I am so worried to hear that you think people dont live beyond 2 years with bone mets. Today with the bisphosphonate drugs available many of us live a long time with bone mets. My bone met was diagnosed in 2002 (original dx 1990)and was very extensive at diagnosis. I know Scottish lass has had it longer than I have and am sure she will be along to post as well.

I have to say I had no obvious symptoms before mine was dx other than to develop sciatica after having a biopsy on my neck which I thought was down to the very uncomfortable position i had been in for some time on the table. But looking back I remember having a tenderness around my scalp for some time whenever I rested on a pillow and that in retrospect was down to the damage to my skull.

Of course the pain in your neck can be down to degenerative disease and many other things but your gp has been absolutely right with your history of bc to get this checked out first. One hears of too many who try everything else first. I hope yours is not bone mets but please believe you can still have many good years if it is.

Dawn
xx

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Bone scan this week

Hi all, I have not posted on here for sometime and then in the past only posted in reply to other people's posts. I was diagnosed grade 2 ER+ in 2005 with no spread and had chemo and radiotherapy and have been on Tamoxifen for 4 years and 4 months. I was discharged from the surgical clinic last Sept and only had more 1 more oncology appt later this year and would have passed my 5 year since diagnosis mark, so thought I was one of the lucky ones. I have been complaining of a stiff neck for the past 6 weeks and put it down to bad posture or sleeping badly but went to see my GP who said he would write to my consultant and refer me for physio, so I got a shock on Wed when an appt arrived for a bone scan later this week. The pain is a constant nagging and my neck clicks when I turn my head. Anti-inflammatories are not having any effect. I have not stopped worrying since, as I read that people only survive for 2 years if the cancer spreads to the bones. My husband's reaction was to tell me I was paranoid and we ended up having a huge argument, he has never accepted my diagnosis and has carried on as though I never had the disease and won't listen to my concerns without flying off the handle. Has anyone had the same symptoms? Am I worrying unecessarily? Soapsuds