I think I am still categorised as a young woman - I am 39 and was diagnosed at 36. Two and a half years after last treatment I have just been diagnosed with secondaries in bones (spine, hip) and am having CT today and MRI brain scan on Monday. I had stopped taking tamoxifen in preparation of starting a family with support of specialists and this has happened in the meantime. I am so terrified of dying and am completely overwhelmed by the incurable element of my diagnosis. My surgical oncologist told me we are talking about years but does that mean? 2? 5? 10? I know that there is no definitive answer to this question but i guess I am just looking for someone who has survived for a number of years after a similar diagnosis to boost me a little as I keep gazing at the autumn leaves and getting all tearful about not seeing another autumn. You know how it is…
I am also sturggling to make the emotional leap from being excited about the prospect of starting a family to realising that i will have cancer for the rest of my life which my not be as long as I had hoped it would be.
Hi Angee
Welcome to the club
Like you i also have bone secondaries in my hip. I am only 35. I was diagnosed 31st May this year with secondaries. My primary diagnose had only been a month before and i was terrified that it had spread so quickly. The thought of having something incurable at my age scared (and still does). There are women around on this website who have secondaries in bone and are still here several years down the line
I know what you are going through -i have had the same thoughts and feelings as you (and still do every single day)
xx Jools
gosh what you say is bringing back the memories!!! I remember gazing at those autumn leaves - the world around me was oh so mellow - but i wasn’t. I was in turmoil. Such a feeling of sadness that I wouldn’t see it again. I think many will identify with those emotions. But for me they are memories - it was 17 years ago that I was first diagnosed (and with a poor prognosis) I never dreamt that I would see so many dreams fulfilled - but I have. Dreams like making my 50th birthday, then my 60th, seeing my children graduate, celebrating our ruby wedding. And now the latest excitement is that my daughter is getting married in April. I know we are all different and we have all I am sure lost friends to this awful disease but without hope we are quite lost. I was diagnosed 5 years ago now with extensive bone mets and the opinion seems to be that this is now treated as a chronic disease and we could live quite a few more years. Somehow that doesn’t always console me because we are living with the ‘what ifs’. But these 5 years have been good and relatively pain free. So I hope this encourages you to go on hoping and to realise some of those dreams.
Hi, I’m in my 40’s and was diagnosed with both breast cancer and bone mets at the same time, in 2003. I feel really well and have never had any bone pain. Hope this helps…xx
Hi, I am so sorry to read this.
This is what I am dreading .(I’ve been diagnosed dec2006 with a prim tumour only).
I really feel for you and all the others. Lots of hugs ((((((((Angee))))))).
I do not really know what to say, maybe I should just not reply. But I can;t and I feel really sad for you and the others. Also because you were getting excited to start on a family, what a change in direction!
I am a bit reassured to read that other people who have been diagnosed with sec. can say that that was a few years ago and that it is without pain.
But of course it doesn’t make it less devastating.
I really wish you all the best , I wish I could help. lots of cyberlove & strenght
Lenneke
I am 31 and was dx with spine secondries in the summer. I was also planning another child and am finding that loss one of the hardest things to deal with.
I am still quite lost and with such an uncertain future am finding it quite hard to look ahead.
I hope in time I will get over the need to know how long I have left and beable to concentrate on the quality of that time, but at the moment that seems quite distant.
I hope you arrive at that point sooner rather than later also.
I just wanted to mention to you about the live chat session Breast Cancer Care run on a Tuesday evening form 8.30 to 9.30pm. This session is purely for people with diagnosis of secondary breast cancer and gives you chance to share your fears and feelings with other’s in a similar situation to yourselves.
If anyone is interested, details can be found by following the support button at the top of this page.
I hope some of you will find it helpful to join the next session on Tuesday.
I’m 36 Angee, was 32 first time round, 4 years clear, and now have many secondaries all of a sudden including spine and shoulder bones. Still awaiting prognosis, but the bone mets sound the most fixable of all - my radiologist was the most encouraging doctor I have spoken to, and really focussed on the future.
good luck, and let us know how it goes
susie
So sorry to hear of your secondaries, but try and keep as positive as you can. I am 26 and like you have bone secondaries. My secondary dx was one hell of a shock, but I have had a good relatively pain free last 12 months, There are loads of people on the site who have had secondaries for a few years - its not a nice diagnosis to live with but as I have found out over the last year you CAN live with it! There will be some dark times, but try and remember there will be some good times too.
Hello all, This is all a step deeper for me (diagnosed 3 weeks ago, had mastectomy 4 days ago) and my greatest respect goes to you all. What a hard journey for so many. I have a question for Jools, and perhaps others can offer advice. With the secondary cancer in the bone is there ever any pain or ache. I have had some occasional stiffness and dull ache in my hips for 4 months but thought maybe just a touch of arthritis. Have never checked it out. Should i mention it to my specialist? Is there any ever pain or feeling with secondaries? Was told my BC was most likely primary but have not had any other checks.
Thanks Liane xxxxxxx
I would advise you to get it checked out - but not at GP level! Go to Onc.
I was dx with primary bc in June 2000 - WLE,chemo, rads and 5 years Tamoxifen.
I was dx with secondaries in Aug 2007 - I had been suffering since May but was heavily pregnant so my ‘pulled muscle’ and ‘sciatica’ were put down to the pregancy by GPs. (I saw 2). I have bone mets in hip/pelvic/lumbar region and a spot on my rib.
So, in answer to your question, yes in my case there was pain and aches. The aches are more like the feeling you get when its cold/damp??
It may be nothing but arthritis - but I was ignorant of secondaries!
Being 7 years on from original dx, I closed that chapter of my life and got on with things - or so I thought.
Please seek further consultation
Thank you Anne. I will certainly follow it up now. Maybe it will be nothing but a few creaks. What is your treatment for the secondaries then. Are you feeling ok? Optimistic? It must be hard with a baby. My youngest is 5 now.
Just wanted echo Sixpen and say to Liane to mention it to your oncologist. It may be creaks, athritis, etc but I have been treated by a rhuemotoligist on and off since my chemo for primary breast cancer ended in Oct 04 and have been having cortisone injections in my hip. i think in October he could not keep up with my aches and pains and decided to do a bone scan to reassure us both (?!). At the time I had self diagnosed osteoporosis and was shocked that the aches and pains I had been having were due to bone secondaries. I would agree with sixpen that they feel like cold/damp aches and pains and I too have hip/pelvic and lumbar mets.
On the plus side, if you have a bone scan and it is clear, look how happy you will be!! But like sixpen says, go to oncologist, not GP. There is a really good secondaries chat room on tuesday evening which I have found really supportive.
I wish you well and come back and let us know how you get on
Treatment for secondaries for me is a 4-weekly infusion of bisphosphonates - takes about 15 mins with a daily calcium tablet (I thought the tabs were quite nice at first, like sweet cigarettes but now its a struggle - very chalky).
Being 42 with active ovaries, I have a Zoladex implant in my stomach - to put my ovaries to sleep.
And, I’m back on Tamoxifen for the time being.
I had 5 days worth of radiotherapy just after dx of secondaries - to ease the pain on hip.
I actually feel ok. People keep saying how well I look.
Optimistic? Well, yes and no. The people on this forum keep me going but then I start thinking bad - like, will I see my baby’s first christmas, first birthday etc etc. I have been on a downer this week - very tearful but then we could blame it on the hormones!
My bone secondaries are in my spine (as well as pelvis and femur) and I wasn’t made aware of the signs and symptoms of secondaries even though I have a strong family history (waiting for my genetic test to come back) so when my back started hurting I put it down to a pulled muscle (as I was very fit, went to gym, skiing, walking etc). When I did eventually go to my GP (10 years after initial diagnosis) he assured me it wouldn’t be cancer. How very wrong he was!!
Because I kept going back to the surgery over a period of 5 months I ended up hardly being able to walk at the end and then I think they started thinking that maybe it was something more serious so had an MRI scan and low and behold I had secondaries in my spine plus a fracture! So my pain was pretty bad at the time but that’s 3 years ago now and although I’ll not be able to ski again I can do other things.
The same as Anne, loads of people say how well I look and I know what you mean about feeling optimistic because I feel the same - am normally an upbeat person but there are times when it gets scary.
