I have just been diagnosed with secondary breast cancer and it has spread to my spine and pelvis.  I had breast cancer twelve years ago.  I am 59 and also trying to stay positive but it is so hard.  I am tired and cant sleep too many thoughts at night.  I am scared too xx

Thank you for making me feel less alone,  I'm so sorry that we are both going through this but knowing we can talk to each other helps, have a good day today

Hope you have had a good day all as we can do is take one day at a time xx  Hope we can keep in touch

Hi there,  how are you doing today, hope you are okay x

Good Morning,

Not doing too badly thank you, I'm having my pic line taken out tomorrow, I'm looking forward to not showering with a plastic covering on my arm but I'm dreading having it taken out as they have war d that it is going to be uncomfortable (in other words, it's going to hurt!)

How are you doing? Xx

Hi I am doing okay but getting stressed as the hospital last week said I would be having another MRI this week, but not heard anything yet, the waiting is the worst bit, but I guess we are all in the same boat.  I'm wishing you good look today with your pic line, finger crossed it doesnt hurt too much.  Lee x

Hello Keel71, I’ve been browsing these forums and just saw yours and had to respond, as you are in a very similar boat to my husband. He had emergency surgery last October to remove a ‘mass’ that had perforated in his bowel.  This turned out to be a GIST that had ruptured, and although removed, the rupture meant that it spread, so he was diagnosed incurable in April this year. Like you he is on chemo tablets, to keep it stable,I  assume you’re on Imatinib? I urge you to contact the charity GIST UK if you haven’t already - they have been so helpful with information about this rare cancer. They have a helpline plus forums. They will advise on where to be treated - there are specialist GIST centres who are experts in it. I attended a recent meeting in London and there were many people who had been on Imatinib for years, with it keeling the cancer stable. But I’d also say that your feelings are very normal in this situation, it’s very difficult. All the best. 

Hello Sunflower2000,

Thank you for your message and yes I am on the same medication that your husband is on and I wasn't aware of GIST UK, unfortunately I haven't been given much information about any of this so thank you for that.

I hope your husband carries on being well.

Take care x

No problem, and please contact GIST UK their website is www.gistcancer.org.uk, they have been so helpful. It’s a lot to take in being told you have cancer, never mind one you’ve never heard of! My husband was 60 when he had his op last year, I was 52. It came from nowhere, no symptoms, to being told it’s spread and incurable, but that he’ll have ‘years not months’, so we’re trying to keep some semblance of normal life but it’s hard. Take care x