I was diagnosed in 2003 and had a regional recurrence in the sternum in 2006 which was treated successfully with rads. Now, 5 years later, my routine annual CT scan has picked up progression in the site of the recurrence. I’ve had a bone scan which was clear and am now awaiting the results of a more extensive CT scan which will tell me whether or not my organs are clear. If they are, my onc has said I could have an op to remove the sternum and I was wondering whether anyone here knows anything about this or could recommend a surgeon who has experience of this, as from what I can gather, I would be the first case of this in my area and I don’t fancy being a guinea pig!
Thank you for the bumps. I know this is not that common, so maybe nobody can help at present, but I have a vague recollection of one of the surgeons at the Marsden (?) operating on mets in the chest area when I was looking into this five years ago… Ring any bells with anyone? Thanks again xx
I’ve managed to dig out the info I found 5 years ago - good job I’m a hoarder! Does anyone know anything about Prof. Goldstraw at the Royal Brompton? Thanks for any info. D Day is tomorrow, so I’d like to go in armed with the info if possible. Xx
not sure if I am a bit late with the info - but have private messaged you and hope you spotted it. I do know someone wbo has had this surgery done but can’t post her info here. What does D-day involved tomorrow? Is it the results of the more extensive CT Scan. If so am wishing you good luck and hope things are not too bad. Are you taking someone with you - or a notebook to make some notes in. It is awful afterwards trying to remember everything you are told.
Hi,
Just wanted to add my good wishes. Don’t have any real info but have done a few searches on the prof. and he is a highly respected, experienced chap an expert in his field. If you do land-up needing the surgery and you get him you will be in the very best hands. Hope tomorrow isn’t too stressful and you get a better picture of possible treatments.Let us know how it goes when you’re up to it.
Julie x
So far, so good - CT scans show disease is contained in sternum, so the op is a possibility. I have an appointment on Thursday morning with the surgeon who did my mast and recon 8 1/2 years ago to see whether he thinks he can do it. All other surgeons in my area have said it’s beyond their experience. If my surgeon can’t do it either, I’ll be asking for a referral to someone who can… Thanks again for all your support. You are a fantastic group of women! xxx
Positive news! The surgeon agrees I should go for the op, but needs a heart surgeon to perform the surgery alongside him. He was really supportive and said that if he can’t find someone here, he’ll refer me to one of the Centres of Excellence… Onwards and upwards!! xx
Thank you! I can’t tell you how good it feels to be starting the weekend not waiting for results… First Friday for five weeks that I haven’t been waiting for news of some scan or another and my wine tastes so much better for it!!! ;0) Have a good weekend xx
Well, I got the results of the PET scan yesterday - the final hurdle on the road to a referral for a sternectomy - and the news wasn’t what I was hoping for: my internal mammary lymph nodes are affected right the way up to my neck, I have a couple of tumours behind the sternum and the whole of the sternum itself lit up. So the op is very definitely not an option now. I start Xeloda on January 4th and am really hoping that will get the monster back in check. Thanks again to all of you for your help and advice. Will keep you posted, Angelfalls xx