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
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.
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…
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.
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.
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.
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
ps - rang my bc nurse 2 days after scan and she had the results on screen, might be worth a try…
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
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)
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
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
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?
just wanted to say hope you hear tomorrow and its good results, i totally know what you are going through waiting is just torture
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
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?
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.
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
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
Good luck with yours too Dawn
Thank you all. This site is brilliant!