spine mets

Just dx yesterday with spine mets 5 years to the exact day I was dx with breast cancer. Spooky ! In a lot of pain as it has caused a prolapsed disc as well. Will I ever feel confident enough to do sports again such as swimming, skiing and running? Up untill now I did a lot of this and now worried about further damaging my spine. Any body got any experience of this out there as feeling very low.

Rosdubh

Hi Rosdubh,
Sorry can’t answer your question, but wanted to say that is real Spooky…and real S**t, very sorry for you, just as you think yeah i’ve reached the ‘’ 5 years ‘’ it comes back and bites you again…my aunt was dx with bone sec’s 15yrs after original BC diagnosis.
Sure someone will come along on here soon who can help you.

karen x

Hi Rosdubh,

Sorry to hear you have had a secondary dx specially after the 5 year gap. You really do start to hope when you get to that stage don’t you. Initially when I was diagnosed 17 years ago I had a five year gap before it all kicked off again. Then 5 years ago I developed extensive bone mets - all my spine and pelvis, then ribs, collarbone and skull. But I continued to swim for some time. Eventually I gave up mainly because my neck area was so bad and I swam breast stroke with head out of water. I suspect the skiing will be a definite no-no. I would have thought that would be too risky and suspect you would not get insurance cover. Do you know yet what treatment they are offering you. I have pamidronate (bisphosphonate) and herceptin. After about the first 3 treatments all pain subsided and I manage with no painkillers most of the time now. Have you much pain with yours - and did it take them long to diagnose it?

Hugs,

Dawnhc
xxx

Hi Rosdubh, I’m so sorry to hear you have mets. I was diagnosed with bone mets, including spine, in 2003. I’ve always been encouraged by my medical team to swim, do other normal things. Although at first I felt a little fragile over time I began to feel more confident. Are you starting bisphosphonates soon? Bisphosphonates have strengthened my bones and helped me have a relatively normal life. I know friends with bone mets to spine who have carried on swimming even horse riding. Hoping with treatment you can resume your sports. Take Care…xx

Thanks for your views. I suppose with time you adjust to these things. Have been on ibandronic acid for a year now since my sternum mets last year but wondered if I should be having IV infusions? Did anybody get radiation for pain or what about more chemo?

Love Rosdubh xx

Hi Rosdubh

I’ve got secondaries in my spine (and had a fracture at the time as well). That was 3 years ago and was a very active sporty person ( swimming, walking, ski-ing, dancing, etc.). Ski-ing is a definite no-no for me - I think my consultant was a bit surprised I even mentioned whether I would be able to do it again - duh!!

But like the posts above, my bones have strengthened from 3 years ago as I’ve been on pamidronate (like Dawn) for the past 3 years. I also had radiotherapy right at the start because of the severe pain and within 3 weeks the pain had gone. I’m not sure about chemo - they only put me back on chemo once they knew it was also in my liver but I think they try to strengthen the bones with the bisphosphonates whether it’s through I.V. or tablet form.

Pinkdove
x

Hi again Rosdubh,

I thought I recognised that name :slight_smile: I remember you well from www.bcpals.org.uk last year and was sorry to read of further recurrence. Like Pinkdove I also had some rads to the worst areas and they too helped, but did not have chemo. I think I had by then exhausted all the available chemos. But they did discover I was her2+++ so am also on herceptin. I wonder if it is worth discussing with your oncologist if you would be better off on IV bisphosphonates?

Dawnhc

Hi all
I am finding it all very helpful listening to your comments, thoughts & treatments. I am new to this - I had DCIS with mastectomy & reconstruction 3 years ago and last month discovered further cancer in my lymph glands next to the original site! After a mri & bone scan bone mets were found on my spine.
I am waiting for my first chemo on 17 Jan (seems a long wait) and seeing my oncologist again after that. Am waiting to hear about hormone treatment too - so will continue to read this thread - so thanks all

Jan

I’ve never tried one of these groups before but having found recently that i have both liver and spine secondaries I’ve spent a few pointless hours today convincing myself i won’t be here for my sons wedding next year so it’s really great to see posts from those of you who have been coping for a number of years.

i was first diagnosed with bc at the end of 2000 and almost made my 5 years before getting local recurrence in the sternum in 2005. thought/hoped had beaten it again but started getting pain again this summer & found out September that it was back with ‘something’ in the liver/spine. Found out last week that the ‘something’ was what I’d been dreading and started on vinoralbine(?) on Thursday.

so far tho i feel great (so good you wonder whether it’s doing anything) and will definitely keep an eye on what’s going on here.

Hi Suekc

Sorry to hear what’s happened to you but I also get a lift reading some of the posts here of people who are further down the road than I am - I’m 3.5 years with liver and spine and feel well at the moment as well.

Good luck - nothing wrong in aiming for your son’s wedding and wanting to be there!!! I’m aiming to see my son graduate which won’t be until 2010 but am determined (if I have anything to do with it!) to be there. He’s been living with my illness since he was 7.

Pinkdove

thanks for responding pinkdove - have decided am going to be positive and aim to at least enter my 50s which takes me to 2010 too - hopefully we’ll both achieve our goals

Hi suekc
Your story sounds similar to mine as I was nearly 4 years free of bc before sternum mets dx last April and spinal mets just before Xmas. Waiting on scan results of liver now. But we keep on keeping on.

Love Rosdubh

Hi Rosdubh

Not sure whether it’ll be of interest to you but I have a friend who has sternum mets and she’s having an operation in a couple of weeks to remove it totally because it’s contained within the sternum. It’s quite a big operation (about 10 hours) then she has about 3 weeks in hospital but, as far as I can remember, they’ll take some bone from her thigh and then build the rest of her sternum with something else but can’t remember what. Have you heard of this before?

Pinkdove

Hi Pinkdove

Yes heard of that sternum op but my oncologist says it is a massive operation and not worth the pain if likely that will have or go on to have mets elsewhere. Which hospital did your friend have op?

Rosdubh x

Hi Rosdubh

Yes, you’re right it is a huge operation and I think she’ll be in intensive care for a while afterwards. She’s having to go to Addenbrookes in Cambridge as that’s where the specialist operates from plus the rest of his team.

She’s had loads of different scans etc to make sure that it’s not anywhere else in her body (don’t know how foolproof that is) but I hope she does well - it’ll be interesting to know. She’s due to stay in for around 3 weeks if all goes well.

Pinkdove
x