Hi everyone ,
Im haveing a NM whole body bone scan tomorrow, after a CT scan showed up something on my spine and hip ,CT also showed a thyriod nodule which im haveing a ultrasound for on 6th nov. Im absolutely terrified as it was quite a shock as only had the CT to DX shoulder problem .(confirmed frozen shoulder)
Its been a horrible 2 weeks waiting for the test and its gonna be even worse waiting another 2 weeks for the results as you all know.
I dont know what to think and am very up and down with it all thinking the worst, i cant help it.
I have aches and pains but put that down to the Tamoxifen i mainly feel creeky/stiff. if that makes sense . I had a bad back at the time of the CT but it eased after a week though the area is still a bit tender.
I was DX july 2007 IDC grade 3 with no nodes and no vascular invasion ,had WLE Chemo/ 23 x rads and now on Tamoxifen.
Had a thyroid blood test this week and have been told that result is starting to show signs of hyperthyriodism (great another thing to worry about ) does this rollercoaster ever end.
Can anyone tell me the symptoms of bone mets, and how likely this is so soon with my DX,
Hope you are all doing ok.
Lindiloo x
I think the question about symptoms of bone mets will have as many different answers as posts here! My own bone mets had no symptoms at all until I got sciatica one day. As I had a pretty aggressive form of bc the hospital ran immediate scans - x-rays, bone & ct. I was dx with extensive bone mets 6 years ago. My original dx was over 18 years ago now. So I went quite a long time from original dx to secondaries, although I had several primaries during that time. It is even possible to be dx with bone mets the same time as a primary dx. unfortunately. But it must be so hard for you with being on tamoxifen because I gather that does make you very achey. The problem with scans, especially relating to bone abnormalities is that many other things can make them suspect. Degenerative disease shows up, as does previous injuries & breaks. I do hope for you that the bone scan tomorrow does not show up anything untoward but the wait is going to be very hard for you. If worst comes to worst bone mets is very treatable and the drugs used have very little side effects. Fingers crossed for you for the scan.
Really feel for you as I had my 2nd bone scan in May and I was feeling EXACTLY the same as you. Sending you a hug and just to let you know that there are lots of us out there going through the same things and wishing each other well.
You may have seen my other post saying I have just seen the breast surgeon and GP today about rib pain spot. I’m now wondering whether to push for another bone scan but almost can’t bear the thought of the waiting for results. My first rib sore spot did not show up as anything in May and I am putting things down to Tamoxifen and wear and tear and not having any oestrogen (no ovaries). But if it all carries on after Christmas I will probably go back!
My bone mets were dx 3 weeks after primary in Feb 07. No symptons but CT scan showed hot spots in ribs and right hip. Felt no aches or pains until changed from Tamoxifen in Jan 08 to femera after ovaries removed. I know what you mean about feeling creaky and stiff! but put this down to femera. I also take oral bondrant for bone and bone scan last month shows no further spread. Dawn is right in saying if by any chance it has spread to bone it is very treatable, but fingers xd you get good news. Good Luck
Lynne
Thank you ladies, im so glad to have this site to come to when we need advice and support , it realy helps to know that we are not alone with our worries and fears.
Dawn thank you for your reply and for letting me know that if the worst comes to the worst then it is very treatable, that is encourageing to know. I do hope you are doing ok and keeping well , thank you for your comments.
Grace, I did see your other post , im sorry you are haveing more worries too, i know what you mean when you say you cant bear the thought of waiting for results, i feel exactly the same ,its causes so much stress mentaly, im ok one minute and in tears the next . Theres a big part of me that just doesnt want to know , i had a scare shortly after rads with another lump under my scar which after tests and biopsy turned out to be scar tissue thank goodness but that was also stressfull at the time. I only finished treatment in march and It just seems like one thing after another and its hard to keep positive at times.
Take care both of you all the very best.
Linda x
Lynni, hi, you’re almost my bc twin! Bone mets (same as yours except left hip, + a few other places) dx Aug 2006, 3 weeks after primary dx. Now on Femara and oral Bondronat, disease well controlled. Had had ovaries removed pre-bc dx. Didn’t have breast surgery - did you?
Lindiloo: sorry to hijack your thread. Hope you are encouraged by the messages we have posted… it’s such a stressful time waiting for results tho! Hope yours are surprisingly good, and that you get ongoing support with thyroid and shoulder too. Do let us know.
Thanks Ladies,
Had bone scan today and everything went ok , its very weird seeing your skeleton on the computer screen isnt it? i had a good view but dont realy know what i was looking for so didnt help me much. I asked how long the results would take and i couldnt believe it when they told me onc would have them most proberly friday if not definately monday, ive already been given an appointment for 2 weeks time 4th nov with the onc for results, and cant believe they are gonna make me wait that long when they are getting them so quickly, im going to pester them to see if i can be seen sooner or if they wont may ask to pay to see him privately for them, dont want too but we all know how bloody hard the waiting for results is.I sometimes wonder if they realise what we go through mentaly. I know they have lots of patients to see but i cant stand the though of the results being there and haveing another 2 weeks of worry.
Thank you for all your messages, it is very encourageing to know that there is good treatments out there for bone mets, i hope you are all doing well and i think you are all such wonderfull ladies for taking the time to allay some of my fears.
Il let you know how everything gos
All the very best
Linda x
Lindiloo - my onc has brought appointments forward when results in, so its worth asking, maybe they didnt expect the results back as quick.
Mrs Blue - I had mastectomy Feb 07, then found bone mets, ovaries removed year later as i carry BRCA2 faulty gene. After that op mets found in ovaries, tubes and surgeon took biopsies from peretineum wall which were also confirmed as mets. Wonderful ehh! But everything seems to be well controlled.
Hi all could you detect bone mets from blood tests …I have had every one under the sun even CA 125 !! So why am I in so much pain?
can someone advise xxxxxMaz
I’m not sure (mine was found by CT scan) but something runs in my mind that if they detect calcium in the blood it could be a sign of bone mets I think i read that on one of the bc websites. Sorry not sure accurate this is. Whats CA 125.
If you would like to give the helpline a call the staff here will be only too willing to talk to you about your concerns. Lines are open again tomorrow at 9am - 5pm and Saturday 9am - 2pm. Calls are free, 0808 800 6000.
CA 125 is a blood test for OV cancer as my mum died of it and I had similar symptoms so they did it because of that …but came back ok !!!
So all the blood tests were ok …so I think I should pull myself together and stop being paranoid !!! and live my life to the full and stop srtressing over secondaries xxxx
Thanx all xxx
I hope you manage to find out your results before 4 November. Hot spots can be other degnerative bone disease (my mother has bad arthritis)and my consultant did not confirm for 6 months .
I think he knew but wanted to get the chemo out of the way and did not want me to have any more scans because he knew it freaked me out. I was diagnosed Feb 2008 and bone mets confirmed about one month ago. Have had one infusion of zometra. Anoter surgeon said ‘think 20 years and upwards in terms of longevity’.
Best wishes,
Thank you to everyone,
I have Fantastic news my onc rang me this evening with the bone scan result and i have been given the all clear , the scan just shows wear and tear , i am so very relieved i just burst into tears, its been one of the worst 2 weeks of my life. Ive still got my thyriod ultrasound on 6th nov but onc says thats not likely to be related to the BC and not realy his area , so hes happy for me to not see him again for 6mths unless i get any other concerns then i can just ring him. Ive never had such a long break from appointments so im so happy.
I couldnt have got through this last 16 mths without all you wonderfull ladies , and want to thank you all for your help , advice and support, you will be in my thoughts always .
All the very best to you all
Lots of Love
Linda xx
So glad for you Linda. I can well understand the tears - we bottle it up and the relief that comes with good news shows just how scared we get. Hope the thyroid u/s goes ok for you too.
So pleased for you Linda, its wonderful to get good news - please try not to think about the b… bc for the next six months - I know you always start to think about it when the Onc appt is due!