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Have a got bone mets - how bad is it?

25 REPLIES 25
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Re: Have a got bone mets - how bad is it?

Hi peaofsweetness
Sorry I can't offer any words of wisdom but you've been through so much I just wanted to send a hug, let you know I'm thinking of you and wish you luck.
Soph
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Re: Have a got bone mets - how bad is it?

Fantastic news - my bone scan was clear. Just had a phone call from my BCN. Some denegeration in my knees but hey I can live with that. So relieved. Very many thanks to all of you who supported me through this really worrying time - hugs to all of you xx
peaofsweetnes5
Member

Re: Have a got bone mets - how bad is it?

Hi ladies

Feeling so confused! I've had skin, womb, ovarian and most recently breast cancer involving left mastectomy, chemo, radio five years ago.
Wanted to make a separate post, but don't know how to, so popped on here to see if anybody can help.
Two days after getting married (nine weeks ago), I had acute lower back pain - ended up going on honeymoon in wheelchair. By the time we returned that pain had gone to be replaced in pain in right shoulder and referred aches and pains in right arm. Saw Orthopeadic Surgeon. Had mri scan on spine (showed little wear and tear on neck and a shadow which everybody has been vague about but they've not appeared concerned). I then had an ultrasound on shoulder and arm; showed problems but not cancer yeah!. Then they sent me for nuclear bone scan showed problem with left knee. Then had mri scan and x ray on knee Referred to Oncologist (same one as before). I have a tumour on my knee. They don't know if its primary or secondary. Apparently doesn't make sense to be primary - wrong age profile etc and secondary doesn't tend to show up as an isolated met.
Please share your thoughts and experiences please.
I'm off to see oncology orthopeadic specialising in carcomas up in middlesex next week to organise open biopsy.
Feeling sooooooooooooooooo tired and being sick regularly.
Lemongrove
Member

Re: Have a got bone mets - how bad is it?

Supertrouper that's wonderful news, will be hoping the same for others awaiting results.

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Re: Have a got bone mets - how bad is it?

Debbie So pleased for you - been thinking about you. What good news. I've had a worrying weekend and not in a good place today. I won't know until next Monday what the outcome is but will let you know. Go and celebrate xx
supertrouper
Member

Re: Have a got bone mets - how bad is it?

After a worrying week - and a delay in getting the results. I am delighted to report that I have unremarkable bones.
Hope everyone gets good results too. Please post up and let us know.

Debbie

NannieSpiky
Member

Re: Have a got bone mets - how bad is it?

Hi filosofie
I do have bone mets but suffer with pain in my ribs even though I don't have bone mets there. I go to have acupuncture once a month and upon his examination he seems quite confident that the pain is in between the ribs. He did give it a name which I can't remember and said that women can sometimes have this problem. Anyway, he treats me with needles and heat and it does ease the pain quite considerably.It is also a very therapeutic feel good factor and that can't be a bad thing.
Might be worth you giving it a try.
Liz x

supertrouper
Member

Re: Have a got bone mets - how bad is it?

Thanks Lemongrove - both prayers and advice much appreciated.

Lemongrove
Member

Re: Have a got bone mets - how bad is it?

Two things:
(1) I will pray for you both (and anyone else awaiting scan results), that things turn out to be non cancer related.
(2) If the diagnosis is not good, try not to project forward, because you will just torture yourself, and block out the good stuff in you life. The fact is that once you have a cancer diagnosis (whether primary or secondary), there is no way of knowing what the future holds (and if everyone went through life worried about what could happen, it would spoil day to day existence). Neither should you attempt to sugar coat things for others, because that will only generate confusion/more questions. You will then find yourself constantly comforting others, when it should be the other way round - and worse re-living the diagnosis, when what you need most, is to come to terms with, and learn to live with it.

supertrouper
Member

Re: Have a got bone mets - how bad is it?

Who would have thought that any of us would be in a position where a diagnosis or arthritis would be good news!

Poor nights sleep last night and that is after a few glasses of rather nice fruity cider. Coming down with a cold so going to pamper myself a little bit this weekend.

Feeling a little more optimistic about Mondays results. Too much gloomy news on the Facebook groups at the moment so steering clear of them this weekend.

dib
Member

Re: Have a got bone mets - how bad is it?

Hi,im same as filosofie,tested for bone mets because of hip and neck pain and its arthritis,Im having mri next friday because the physio made it worse and he doesnt know how to treat it until he sees the scan results so hopefully you will both get similar diagnosis,good luck,
Di.x

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Re: Have a got bone mets - how bad is it?

Hi - Good to hear from you all - feeling a bit more positive this morning. Debbie you have a great attitude - I'll be thinking of you on Monday. AmysMum hope your news is better than you anticipate. Good luck to both of you. x
filosofie
Member

Re: Have a got bone mets - how bad is it?

Hello everyone
I've been on letrozole since June having finished chemo and radio. I was also diagnosed with osteoporosis and am taking alendronic acid & calcium for that. I was expecting to have pain in my joints but have been having a lot of pain in my lower right ribs as well. I was convinced I had bone mets. They gave me a bone scan which, thank goodness, was clear. But I still have the pain. I'm tempted to say I feel like I'm 90 but my mother is 87 and she feels less pain than I do. So good luck with the scans and this is just to say that so far none of my symptoms seem to fit into the expected pattern and I hope what you're experiencing turns out to be similar.

supertrouper
Member

Re: Have a got bone mets - how bad is it?

So - three of us now in the waiting room. I should get my results on Monday, Amysmum on Wednesday and Chipmunk probably the week after.
Positive thinking is my way of dealing with this over the weekend. I will deal with what ever the results are when I get them.
I will be thinking of you all whilst we wait for our results, and fingers crossed that we all get good ones!

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Re: Have a got bone mets - how bad is it?

Hi I am another suspected bone mets lady, but I am a little further down the line than you. I have had back-ache since mid-August, and x-ray mid September and then a bone scan mid October. The x-ray and scan both showed deterioration of one vertebra and the ache is my muscles (and ribs) trying to work harder around it. My pain was worse if I lifted anything much heavier than 2 kg (so that includes bags of potatoes), did anything to jar my back (so falling down a hole in the sand on the beach).
My onc has prescribed me 10 radiotherapy doses and I have hd 7 already. I also have morphine and a couple of bone-building drugs. Today I had a ct scan and get definite results next Wednesday, but I am pretty sure that it is bone mets. My pain has been worse on rads. but an increase in the happy-pills are getting it back under control.
If you go on the Bone Mets in the Living with Secondary section, you will read some good stories from ladies who have been living with controlled mets for many years.
amd66
Member

Re: Have a got bone mets - how bad is it?

Chipmuck oops!!! sorry (so i left the typo in), chipmunk and supertrouper just wanted to wish you luck and get through the weekend as best youcan. as we say so often thats why this forum is so good, someone has gone through it or is the same as you.
hope its all okay
anne xxx
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Re: Have a got bone mets - how bad is it?

Hi Dawn - thanks for your support and encouragement. I'd forgotten how good it is to have this forum. Will let you know what happens Linda x
dawnhc
Member

Re: Have a got bone mets - how bad is it?

Hi Linda & Debbie,

I say your post heading and thought I would come and offer encouragement. It is so hard waiting for results - I have had to do that far too often so fully sympathise with you both. I do have bone mets - it was diagnosed 10 years ago and I have lived quite well with it for many years even though it is very extensive. My main problem more recently has been controlling pain but those of us with bone mets are all so different in the way it affects us. One thing I wanted to say, and if I am wrong I hope some of the other bone mets girls will come and correct me but I have never come across anyone with bone mets where it affects their knees. So I am hoping for you both that there is some other reason for your pain. It's amazing how willing we would be to accept a diagnosis of arthritis when secondaries are the other option!!!! Best of luck to you both. Do let us know how it goes.

Dawn
xx

supertrouper
Member

Re: Have a got bone mets - how bad is it?

I think we will both be fine! I'm going to go out now and visit my Godfather who is in a care home. Been meaning to go an see him for weeks now but always seem to be too busy. As I have time to kill today I will put it to good use. Three Hearty Beef Stews in the freezer - just need to thaw the contents of the ziplock bag and throw it into a slowcooker before I go to work next week. Lovely!
My family know about the bone scan - I told them it was purely precautionary. No need to worry them until there is something to worry about!
Catch up with you later and feel free to send me a private message if you want to.

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Re: Have a got bone mets - how bad is it?

What a shame - I must admit I'm struggling with the weekend anyway - just want to get on with it and find out what I've got to deal with. Its hard to put on an act for everybody as only my partner and I know about the bone scan. Everybody else thinks I'm doing fine. Spoke to my student daughter on the phone this morning who's full of beans and enjoying life. Hope I don't have to give her bad news any time soon. Thinking of you over the weekend. x
supertrouper
Member

Re: Have a got bone mets - how bad is it?

She did it again - rang me again to ask if we could change the date of the appointment to discuss reconstruction. When I said she was freaking me out a bit and I mentioned yesterday's bone scan she said that the results wouldn't be back today and to ring on Monday - it's going to be a long weekend!
I know what you mean about tests and results - brought it all back to me yesterday having to have the scan again. Oh well, positive thoughts and all that - what will be will be etc etc........

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Re: Have a got bone mets - how bad is it?

Hi Debbie was thinking about doing some cooking myself! Its a horrible time isn't it. I'd thought waiting for tests and results might be behind me. Good luck at 4. x
supertrouper
Member

Re: Have a got bone mets - how bad is it?

If you are anything like me Linda - then you will worry about every little ache and pain. I've distracted myself this afternoon by doing some cooking - it worked for an hour! I have decided that I will ring my BCN at 4pm. Freaked out a bit before when the phone rang - it was the hospital - "can you come in to discuss..........." I thought she was going to say "the results of yesterdays scan" - but no - they want me in to discuss the delayed reconstruction. I do hate waiting for results!!

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Re: Have a got bone mets - how bad is it?

Hi Debbie - thanks for replying so quickly. It's good to know I'm not alone. I hope its good new for you. I'll let you know how I get on. Hugs.
Linda
supertrouper
Member

Re: Have a got bone mets - how bad is it?

Hiya - I am in the same situation as you except I wasn't sent for an xray - they sent me straight for a bone scan yesterday and I am now waiting for the results. My pains are lower back left shoulder and arm and left knee. Fingers crossed for both of us eh? I am trying to keep busy and will ring my BCN this afternoon as the results might be on the computer by then.
Keep us posted as to how you get one please.

Debbie

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Have a got bone mets - how bad is it?

Hi I'm really scared. I was diagnosed in June 2010, had two lots of surgery including removal of lymph glands; chemo and radiotherapy. On letrazole since April 2011. Back at work since May 2011, doing OK apart from chest and throat infections. Started having various aches and pains about a month ago and three weeks developed low back pain. Saw my GP last Friday as the pain seemed to be fairly constant, moved about - middle and upper back, hips, sides of body and sometimes knees. He didn't seem to concerned but sent me for an xray last Friday. However the xray came back showing a slight thickening in the lower spine which wasn't there two years ago. Going for a bone scan next Thursday and results the following Monday. He said it's not conclusive and the breast care nurse said it may be just be arthritis. I'm convinced its bone mets. Don't know how bad it is and what the future holds. Pain now fairly constant but probably made worse by stress! I feel Ok otherwise but can't think about anything else. Help