Had a mastectomy in 2001 now i have secondary bone cancer. I am having treatment to contain it but am feeling very low today
Hi,
There will be a lot more ladies along to help you soon with a lot more experience of bone mets than me but just thought I’d say hello and hope you’ll soon feel perkier.
Am sure part of it must be the secondary diagnosis and part of it your treatment - what are you on ? I’ve had bone mets since diagnosis in 2007 and am on maintenance treatment. Went to see onc last week for a checkup and don’t have to go back for 3 months so that’s great - off on hols before then !! Some days I’m so lethargic and I feel a bit down and other days everything is great - the sunny days are definitely better but it’s been wet here today…
Good luck, Liz
Hi MrsD
If you feel it would help to talk things over with someone please call our helpline for further support and a listening ear. The number to call is 0808 800 600 weekdays 9-5 and Sat 9-2. Our helpliners can also talk to you about our other secondary support services which you may find helpful.
Take care
Lucy
Hello Mrs D, sorry to hear about your diagnosis. It must be so hard as its a while since you had mx. Mine all came at once unfortunately. Was diagnosed last January and after my 2nd op for wider margins was in agonising pain in the rib area and down one leg. During 2nd lot of chemo they diagnosed secondaries to the bones in 5 areas. Well I really thought it was goodnight vienna but once I found out more and got lots of support from other ladies on here, I calmed right down. There is a lot that can be done, such as more chemo,rads or even things like hip replacements. At the mo all is well with me - I take a daily tablet called Bondronat (plus tamoxifen for the bc). I am not in any severe pain (just normal aches and pains). My onc told me I am not going anywhere anytime soon - many ladies on here are living with secondaries for many years and keep surprisingly well. My cousins friend has had them for 25 years which would take me to 75 and I would not be complaining. All in all I wanted to get across that many many of us are doing fine - like Liz my Onc doesnt want to see me for 3 months either as all is stable, hope this helps a little - please ask away if anything is worrying you, love n best wishes to you, Debbie x
Hi MrsD,
It must be a shock to get a secondary dx after so many years. Just when we thought it’s never going to happen to us… huh?
I had my primary and bone secondary dx about 2 weeks apart in June, 09. I’m on Zometa for the bone mets and my onc has claimed that it has done a good job. Also on Tamoxifen for just over 3 months now after 6 months of chemo. I’m not sure Tamoxifen is working very well because I’m experiencing more discomfort than when I first came off chemo. But I’m seeing onc on Wed, so hopefully he can confirm that for me one way or the other.
Yes, I do have very low days, like everybody else. It could be caused by all those treatments I’m having, or just those uninvited thoughts and worries. But I have had better days when I feel a bit “normal”. I found talking to other people in a similar situation really helps, in the forum or in real life.
Take care and hope you feel a bit brighter soon.
Hi Mrs D
Just wanted to offer some support too I am not long diagnosed with secondaries after almost 5 years since original primary diagnosis. Days are definitely very up and down just now, such a massive shock to the system think although was always living in abit of fear of it coming shocked to the core of hearing the actual words is an understatement. You are not alone ! ! ! Always someone to speak to you or answer your problems on this site so you dont feel so alone sometimes, take care of yourself
Luv Max xx
Hi Everybody, I had breast cancer 18 years ago and had a mastectomy, chemo, rads and tamoxifen. I really thought I had beaten it, but now out of the blue its returned in my liver and spine. Bummer! I’m now having 18 weeks of Taxotere and I’m on Bondronat for the spine. However, I think I was very lucky to get my clear 18 years so if I manage a couple more I’ll be reasonably happy. Take care of yourselves everyone, good luck and god bless. Dianne x x x
Hi MrsD,
It must have hit you really hard to hear those words. To have gone 10 years and life really back to normal you just don’t expect it. My first diagnosis was in 1990 and I had 5 years o.k. But then it must have been every couple of years I had some further occurrence. But in 2002 I was dx with very extensive bone secondaries. I think I felt then that my life hadn’t long to go, but once I got on the bone drugs (pamidronate) and the pain was under control I was able to live a pretty normal life. The last couple of years I have had more problem with pain. But it is surprising with the drugs available (and very few side effects) how much can be done done for bone mets. I hope you will take some encouragement from the posts here because there are a number of us with bone mets who have been doing well for a long time now.
Dawn
xx
Hi Mrs D - would you be willing to say what your bone mets consist of? I have one very small one in my spine, and my onc seems pretty confident about either knocking it out or keeping it stable. She thinks I’m going to be here for long time yet - obviously there could be other surprises around the corner, but she is not treating the bone met as a huge disaster. I hope this will be the case for you too.
Hi Dawn,
Thank you so much for that positive post. After 10.5 years from primary dx I was told a couple of weeks ago I have bone mets in ribs & spine. Everything has happened so quickly. I’m currently having radiotherapy to prevent spinal cord compression and also one of the worst affected ribs.My onc is on maternity leave & I saw a registrar but just feel so rushed and out of control.
The worst thing has been been telling my family specially as you just can’t give any real idea of timescale. As most others on here have probably done I just want to know there is hope, that there are people out there living with bone mets and some for a good length of time.
So thankyou for giving me a little hope. I know there are no guaratees but it’s good to know there are people surviving and living.
JulieD
Hi Julie,
I am glad it helped. I remember so well how it felt 8 years ago when I was told I had bone mets. My onc was a bit conservative when he first gave me the news cos I was about to go off to Cyprus for a holiday and had only just had the scans done. So when I asked him if it was ok to go, and was there anything I ought to know LOL - he told me the problem causing my pain was bone mets in my hip but to go and enjoy the holiday and they would deal with it when I got back. It was only after the holiday he told me just how extensive it all was!! But the treatment was just amazing in controlling the spread, and the pain. What treatment are you having Julie apart from the radiotherapy. I had 2 areas that were treated when it was first diagnosed and I did find it helped a lot with the pain.
MrsD how are you doing - it has been a couple of weeks since we heard from you? I hope you are starting to feel a bit better now.
Dawn
xx
Hello Mrs D, hello all,
I’ve not been on the forums much lately, but wanted to offer my support too. I had primary dx in 2003 then was dx with bone mets in 2008. I was devastated as I’d thought I’d beat it by then, so I can understand how you must feel. At first I was thrown into an utter blind panic but the shock of it did wear off and now I just try to get on with things. I’m on three weekly herceptin and pamidronate these days and am beginning to feel hope that I’ll be around for a good few years yet, and sincerely wish you the same.
Hope you’re feeling less low now.
Best wishes.
Alison