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Concerned about bone mets, please help!!!!

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Re: Concerned about bone mets, please help!!!!

hi, fingers crossed its nothing and you had such a good prognosis that hoefully its something totally unrelated xx

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Re: Concerned about bone mets, please help!!!!

Hi all

I was diagnosed in aug 08 with early breast cancer stage 1 grade 2 tnbc 7.5mm less than 1cm. Treatment wle and rads (chemo not offered). Considered to be over treatment by medical team. NED in nodes or vascular system. I was told repeatedly by breast care team that prognonsis was good and to get on with my life. In january this year I developed a pain in forhead when pressed also at rear of skull. When I mentioned this to my onc he sent me for a brain scan which was clear. I still have these symptoms 6 months on. I mentioned this to my onc on Monday who has decided to send me for a bone scan. I am annoyed with myself as I did not make connection with bone and my skull symptoms, but neither it seems did my onc. I am terrified that I may now have secondary disease and it is less than one year since the original diagnosis of a very early breast cancer. I ask myself what is the point of treating early breast cancer when the disease has already developed into secondaries.

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Re: Concerned about bone mets, please help!!!!

hi there belinda and dawn

Thanks for your advice, glad to hear your both coping well, its probably better not asking too many questions like you say, because we cant change anything and we might not have so much hope.
take care x

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Re: Concerned about bone mets, please help!!!!

Hi edm,

Like Belinda I too have had bone mets for some time now - since 2002 (originally dx in 1990) and no other organ involvement. I have been treated with bisphosphonates and herceptin and things are generally pretty stable (just at the mo I have a problem with my hip and lower spine so have had some rads to those areas). I have never wanted to know what the risk or stats are of it spreading elsewhere because to be honest I dont think anyone can tell you.

dawnhc

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Re: Concerned about bone mets, please help!!!!

Hi there, I was diagnosed with bone mets in 2003..so far I've had no other organ involvement. The treatments I've had have worked well and I have tumour markers (bloods) taken every 4 or 3 weeks so as my markers rise and a treatment fails I'm put onto something else. I sort of expect to get mets elsewhere eventually though but over time I've learned to live with this uncertainty and some women, was told this by my onc, never go on to develop soft tissue mets after their bone mets diagnosis. Hope the chemo has worked well for you.
Take Care, Belinda..x

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Re: Concerned about bone mets, please help!!!!

hi everyone

i am just coming to the end of my fec treatment, was supposed to have heard about scans to see what treatment was to follow, but havnt heard so i will ask during my last treatment.
i have bone secondaries in my ribs and shoulders up to know (dont know if scan will show anything else)
but what i was wondering is, how do you know if cancer will spread again from the bones?
or is it just the tablets and other treatment that can just keep it under control, because i have been told its not curable. i havnt talked to my oncologist about this yet wondered if anyone has had that conversation.

take care everyone. x

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Re: Concerned about bone mets, please help!!!!

hi

I am soooooo pleased for you - the fear of secondaries is always very frightening especially when your SOOO young.

hugs
Sukes

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Re: Concerned about bone mets, please help!!!!

Such great news about your scan kelly.Try to be kind to yourself now,you said the headaches were better so cautious optimism is the thing((((((0))))))Valxxx

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Re: Concerned about bone mets, please help!!!!

good news so far kelly.....heres hoping the brain scan brings good news too.
Can understand your reaction to results too.

karen

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Re: Concerned about bone mets, please help!!!!

That is good news Kelly..Good Luck with your other scan...x

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Re: Concerned about bone mets, please help!!!!

Hi ladies,

thank you so much for all your kind words. Well, the results of the bone scan are in and amazingly there is no evidence of metastatic disease!! I am surprised to say the least, and after I put the phone down from my trials nurse I had one of those moments where you can't tell whether the conversation you've just had was real or not! I was so expecting it to be bone mets and am shocked that its not. Obviously I am relieved, however I am not naive enough to think I'm out of the woods just yet as I have a brain scan looming. Also, the pain hasn't suddenly gone away, and all the while its still there I will be keeping an eye out to see if it gets progressively worse. I am pleased with my result but I know many people who had clear scans one minute and then a couple of months later there were dramatic changes.

Forgive me for not being more chuffed with the result,

Thanks for all your support,

Take care all,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi Kelly,

Like everybody else on here, especially those of us who have had the benefit of your support, I hope and pray that you get good news.

Take care,
Pauline x

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Re: Concerned about bone mets, please help!!!!

Hi Kelly,

Have been following your thread, I want to send you my hopes and prayers for good news.

I am just finishing my rads and boosters, i have not had a scan yet at all, my team dont do as routine, they said I can have one later if needed, they work on the facts that lots of scans and MRis show positives which then show up to be nothing to worry about, so they can cause lots of worries. I was diagnosed last July with grade 3 and had lumpectomy and full clearence 1/15 node involved, I have had achy hips, wrist and back for quite a few years so its in my head is this linked or are they really just old muscular and vertebrae probs. So worrying isnt it. I had taxotere and that can leave you achy so I am going to see how I go, if still worrried when I finish rads I will ask for check up scan etc

Thinking of you, let us know when you here
Take care
Dawn X

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

Hope you get good news. I'm thinking of you.

Sinead x

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

Just replied to you on your other thread in waiting for test results... K x

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Re: Concerned about bone mets, please help!!!!

Hope you get good news Kelly, what makes you think that they took extra images of the spine. It's got so many nooks and crannies etc that I would have thought they'd have to take lots and lots of images.

Anyway, fingers crossed for you.

Angie

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Re: Concerned about bone mets, please help!!!!

Kelly

The waiting game is the pits isn't it? Hope you get a call to say all is OK, if not you know where to find us.

Take care

Nicky x

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Re: Concerned about bone mets, please help!!!!

Good luck Kelly. Thinking of you

Love

Dilys
xxxxx

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Re: Concerned about bone mets, please help!!!!

Me again!

My lovely trials nusre has just called. It turns out I was right to call as my onc is actually away until the 25th!!! The results aren't in yet but she expects them to be back later today if not tomorrow. She is gonna keep an eye out for them and will be in touch asap. If they are ok then I'll be getting a call to say so, otherwise I'll be asked to come in for an appt.

More nervous than ever now!

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi ladies,

well I am now beginning to drive myself mad, and 'well wishers' aren't helping much either! So, I have decided to try and hurry things along a little. I have called my trials nurse who is great and always my first point of contact for all things onc wise rather than my bcn. Unfortunately I got her answerphone so I have left a message and hopefully she'll call me back sooner rather than later. I hope that she will be able to chase up the results for me. The painis certainly not getting any better and I feel I don't want to wait until after my brain scan as that is not for a couple of weeks yet!

I'll be sure to let you know whats what as and when,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi ladies,

thank you so much for your support, it is very much appreciated. Well, I had the bone scan on thurs afternoon. Me being me I am now worrying day and night about the results and what it showed! The radiographer took loads of extra images of my spin, with me in different positionsso this had got me worried that she saw something she didn't like the look of!

Only time will tell I guess. So, I'm playing that horrible waiting game now! Brain scan not for another couple of weeks but not so worreid about that as my symptoms seem to have eased quite a bit.

Thanks again all,

Take care,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

hi Kelly
Will be thinking about you , please keep smiling,
you are such a star
galen xx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

You were diagnosed about the same time as me and we had our treatment at similar times. You have provided so much support for lots of people on this site. Like so many have said already, I will be thinking of you while you wait for your results and I hope so much that all will be ok.

All the very best
Anne

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Re: Concerned about bone mets, please help!!!!

Hi Kelly
good luck with both scans.

Love Debsxxx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly,

Just wanted to wish you the best of luck for your scan. I will be thinking of you.

Sinead x

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Re: Concerned about bone mets, please help!!!!

Hi Dilys,

thank you so much for your good wishes, much appreciated. I will be sure to let you know how I get on,

Take care,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

Will be thinking of you and praying for you my love. And you are right to be worried - who wouldn't be! I am worried already about a routine mammogram in August on the other breast.

Good luck tomorrow my dear Kelly, and a huge cyber hug to you

Much love

Dilys
xxxx

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Re: Concerned about bone mets, please help!!!!

Hi all,

just to let you know I have my bone scan tomorrow! Really nervous now although I have no idea why, given that its not 'til 5 so I won't be getting any results tomorrow. Also, I was told that I won't get the results until I have had my brain scan as well so not sure why I am getting all anxious already!

I'm just so worried that my bubble is about to burst if you know what I mean?

Well, guess I'll be playing the waiting game from here on in. I'll let you know how it goes,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi Kelly -

thank you for your good wishes - how lovely of you to think of others while you are going through so much stress. I am glad you did not have fight for the scans, on the whole I think most ONCs do want to look after their patients. I told my onc I worried about wasting their time and resouces and she just looked at me and said 'we are here to look after you ...' Isn't that reassuring?

Good luck with - let us know how it all goes

Jacqui

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Re: Concerned about bone mets, please help!!!!

Hi Kelly, as I said last week, I know how you feel waiting for the phone call was awful, all I can say is keep yourself busy in the sunshine!

Take care

M xxx

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Re: Concerned about bone mets, please help!!!!

Great news,no battle.I like Agrawal he doesnt do false optimism but isnt needlessly gloomy either.I hope the scans happen quickly and you get the results you want.Love Valx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

Well at least you have action. So glad you didn't have to have a big fight. With all the good vibes coming your way let's hope the results are positive.

Much love

Dilys
xxxx

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Re: Concerned about bone mets, please help!!!!

Hi ladies,

I'm so sorry I haven't got back to you sooner. Well thankfully my onc was wonderful and took me very seriously indeed. I was worried as I was prepared for a battle, although obviously I didn't want one!

Anyway, to cut a long story short I am to have a brain and bone scan asap. Soon as I have had both (they are done at different hosp's) I have to call the onc's secretary so she can request the results soonest. IF there is anything sinister I will be getting a call asking me to go and see the onc, otherwise an appt will be made for me to see him in 6 months.

So, as soon as I have had both scans I will no doubt be bricking it each and every time the phone rings in case its the onc's secretary. Should we get that call then I guess we can guarantee the news isn't good so I'll be sure to take my OH with me. My onc looked at my recent blood results too, and although he shared a quiet optimism with me I can not allow myself to build my hopes up.

Paula - I read your thread and I am so sad for you. I honestly do not know what to say to you. A good friend of mine went through similar back in March, and likewise I was stuck for anything constructive to say. I am so so sorry for the situation you now find yourself in and I send you huge cyber hugs ((((((((((o)))))))))),

Jaqui - I hope you get your results v.soon and they are good,

Take care all and thanks for thinking of me,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi Kelly,

Thinking of you and hoping you're ok

Sinead x

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

We are all wondering with everything painfully crossed for you!

Love

Dilys
xxxx

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Re: Concerned about bone mets, please help!!!!

Kelly -

Wondering how you got on. hoping that no news is good news.

love Jacqui.

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Re: Concerned about bone mets, please help!!!!

hey girl where are you?Love Vxx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly
Been thinking about you, how did you get on ?
love galen xx

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Re: Concerned about bone mets, please help!!!!

I hope today went ok for you Kelly. x

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Re: Concerned about bone mets, please help!!!!

Thinking of you kelly will be looking for your post later Vxx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

Good luck darling...I have not had good luck I wrote a threat in secondary section ..i now need a miracle

Gill23....good luck with Simcock, says it as it is. Brighton are pooh at getting results.....but I know some people get great experiences there.

I waited 3 and half weeks for MRI scan cos simcock was away........turns out metastic result in vertebrae...still noting like acting quickly eh.!!!

I am sorry I dont have alot of faith in them. Each time they said....no nothing to worry about it turns out there was something to worry about and here I am in this horrible nightmare. Sorry sorry rant over as I said not everyone has bad experiences....good luck sweetie

Love P xxxxxx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly -

i think we ere diagnosed about the same time - followed alot of your threads, you are so supportive of others. I will be thinking of you let us know what happens. I had a bone scan today so appreciate you worry.

cyber hugs - Jacqui

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Re: Concerned about bone mets, please help!!!!

Hi Jools,

thanks for your support. I'm sorry to hear you had the double whammy diagnosis in one month, that must've been particularly tough to deal with. I hope you are getting the treatment and care you need and are doing ok,

Take care,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Hi Princess. You are right to insist on a CT/Bone scan. My bone mets was picked up through CT/Bone scans before I started my first chemo. Primary and secondary cancer all in one month. When I look back I realised and had been grumbling to OH for several months about a pain in my hip. Never in my mind did I think it would be cancer though. I will keep my fingers crossed for you
Jools xx

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Re: Concerned about bone mets, please help!!!!

Thanks ladies,

I'm soooooo glad its nearly thurs! I'm in a fighting mood right now and am not prepared to be fobbed off tomorrow! Hopefully the onc will arrange the scans I believe I need without any sort of struggle on my part,

I'll be sure to let you all know what happens,

Thanks again and take care,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

Good luck for tomorrow Kelly, will be thinking about u and keeping everything crossed u get some really good news.

Take care
Love
Dawn
xxx

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Re: Concerned about bone mets, please help!!!!

Hi Kelly

Me again, just to wish you love and strength for tomorrow. I'll be out all day but will check in to see how you get on later in the evening.

Much love

Dilys
xxxx

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Re: Concerned about bone mets, please help!!!!

Hi jumpforjoy,

many thanks for your post. You have defo given me the confidence to insist on a bone and ct scan at the very least, if my onc doesn't suggest it himself. I have had the pain for a while now and at first it was suggested it may be down to my posture. Admittedly it did ease for a while once I sorted my posture out but it never really went away, and now has definately come back with a vengence!

I will certainly be asking the question tomorrow re:bone mets and will not be fobbed off.

Thanks again for sharing your experience with me. I am glad that you are now getting the treatment you need and hope you are doing well,

Take care,

Kelly
-x-

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Re: Concerned about bone mets, please help!!!!

I would say - at your visit to onc insist as firmly as you can for a bone scan and CT and or MRI scan. My secondary diagnosis was delayed for 6 months because the GPs,a physiotherapist and the Breast clinc (for routine annual check up) did not spot the signs or take my query - could it possibly be secondary breast cancer in the bone? seriously enough. I had terrible back pain which came on suddenly. I called out the doctor to my home as could not move, which was diagnosed as a bad strain. It did get better and I carried on for six months, but kept returning to GPa few times as a niggly pain was still there. Eventually a different GP did blood tests and sent me to the hospital. I then had all the tests and secondaries found in bone ( including two collapsed vertebra), lungs and liver, since then have a had good treatment, but I would have preferred to have had the diagnosis 6 months earlier. Better get it checked out asap in my opionion!! Hopefully it will be nothing to worry about, but better to know rather than delay.

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Re: Concerned about bone mets, please help!!!!

Hi Polly,

thank you so much for your kind words, much appreciated.

I hope you are doin ok,

Take care,

Kelly
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