Hi I have just found out that I have mets in my lumbar spine. Fortunately due to all the positive things posted on this site I have not paniced in fact I think they are a little in awe of my calm reception at the hospital. Still waiting to have a CT scn to check my organs then see the onc in 2 weeks for a treatment plan. Must say they are very efficient at Winchester.
It is over 5 years since diagnosis - they thought they had discharged me - just goes to show you can’t get too complacient with this disease.
Anyway just thought I would say hello.
cheers for now - Jacqui
Hi there. Glad you aren’t panicking. There’s so many treatment options.
X sarah
Welcome Swanie/Jacqui, sorry you have to join the bone mets ladies. My name is Val and I had 10 years between first diagnosis and finding out that I had bone mets. I have been having treatment for bone mets since 1999. There was no site like this to bounce off and find information.
There is a thread on this site called “Bone mets, please join in”. Not sure if you have seen that actual thread but you can find it under latest posts if you scroll down a bit…or go on to the left hand column and you wil see the title “Living with secondary breast cancer”. Click on the second line that says the same thing and you can also find us there.
Since my diagnosis there have been lots of new treatments avaiable. I have made really good friends on here whose advice and support has been really helpful and now we try to do the same with new people like yourself.
I am having an op tomorrrow so I may not reply until next week but please fire away if you have anything you want to ask us. We are a freindly lot! I wish you well in your new treatment but sorry that you have to join us. Take care.
Hi there Sarah and Val,
thank you for your welcome. My spouse will be very happy to hear that you have been having treatment for 13years. The look on his face this morning resembled the proverbial bunny in the headlights.
I am sure I will be posting and asking once I get my treatment plan. Good luck with the op Val. will be thinking of you
Jacqui
Hi Jacqui,
I am in the same situation as you, just been dignosed with bone mets, orginal was 7 years ago and having more tests. I am not coping as well as you, but do understand about your husbands reaction as mine was the same.
Good luck with the rest of your tests
Jo
Hi Jaqui
Just to say that I was originally diagnosed with primary breast cancer in 2000 and then had bone mets diagnosis 10 years later in Jan 2010. I was completely devastated at the time and still can’t quite beleive that it came back after so long when I thought I was through it. I have been on hormone treatments and chemo and everything is stable and there is no evidence of active disease at the moment. I am reassured when the Consultant tells me there are lots of different treatments out there and when one treatment stops working they try another. 2 years and 8 months later I have no symptoms and feel and look very well,still swim, do yoga, cycle etc.
Hi Jacqui and Jo
As the other ladies have said, welcome, but sorry you have had to join us.
My bone mets dx came four and a half years after my primary, again, I thought I’d beaten it, but hadn’t. Since then I have had chemo, right at the beginning as I also had a local recurrence, and then hormone treatment. Most of us are also on bone strengthening treatments as well, either by IV or tablet. As with Esha Ness I live an ordinary life, similar to before, going for walks, to yoga, Pilates, and trying to enjoy every precious minute.
It is a dreadful shock to be told your BC has spread and not just to us, to our loved ones as well. I was so scared and frightened when I was told and my family was devastated. Once I had a treatment plan in place I felt able to adjust and my determination to fight as much as I could came into play. Give yourselves time to adjust, it can take some of us a long time, others not so long. As one of our long timers, Val, has said we are a friendly bunch with a lot of knowledge about various treatments so do come back and ask questions. After a while you may want to post on the Bone Mets thread that Val mentioned as that’s the most likely place to find us all 
Good luck with your treatment plans, I hope they slot into place quickly.
Nicky x
Just to say hello and welcome Swanie. I also have bone mets, and was the first person in the UK to have Cyberknife stereotactic radiotherapy for bone mets. I have since been involved in setting up a charity to raise awareness of this procedure.
www.ukcknetwork.co.uk
You will find lots of support and information on this forum, and also many BCC members form into local support groups and meet up for lunch or a cuppa. If you post to enquire about a support group in your area, you are bound to get a reply.
Hi there
Thanks for all your encouraging remarks. It is a real outlet to have a place to tak about this. The Good news threads are excellent therapy. CT scan on Tuesday 28/8/12 then a treatment plan.
Spouse is finding it hard to accept the news so far - he was discussing pension plans today…he cannot acknowledge the fact that I may die first so he keeps pointing out how much I will get when he dies. It just feels way outside my priorities at the moment.
hope things are OK with you Jo. Let us know how things move forward for you.
Your weblink looks very intersting Lemongrove. I will file it away for my onc appointment.
cheers for now jacqui
Hi Swanie,
Just thought I would say ‘hello’ I remember you from five years ago - I think you had a very interesting job - was it somethng to do with swans (hence your user name I guess). Anyway just wanted to wish you all the best - as the other ladies have said there are lots of treatment options for bone mets which will hopefully stabilise thngs for you, still it must be very scarey so hang in there.
cheers
Caroline
Hi Jacqui,
I’m another one like you who almost got discharged at 5 years, well not quite, but put onto yearly checkups. Didn’t quite make the yearly as it came back - but that is all history as I was first diagnosed in 1990 and have had several recurrences. I was dx with bone mets in 2002 and at the time of that dx it had gone to several areas including all my spine, pelvis, hips, skull, ribs & collarbone. How it went so far without me being aware is quite scary. But I just wanted to say that I have done relatively well all those years with herceptin and bisphosphonates keeping it under control. It is just these last 2-3 years that pain has become a little more difficult to control. Hopefully if you can share with your OH some of our stories he may find it helps him to come to terms. I am so glad you found the forums and our bone mets thread which I am sure is a huge encouragement to many. My OH is at an age where I am quite naughty and tease him a bit saying he could well pop off before me!!!
Dawn
xx