Hi all,
I may well be jumping the gun here but always good to be prepared!
Quick summary of my story. Diagnosed 5 yrs ago today with primary and bone mets at same time. Had chemo, mx, anc, rads and then on zoladex and arimidex plus zometa. Had bit of spread in T9 18 months ago which was sorted with a one-off rads blast. Have done well and feel fine. However, over the last couple of months I have had back ache and tingling plus numbness from my spine round my middle. This feels like it did when I needed the last rads blast but lower down and not all the time - mostly lying down at night. Been to checkup today and discussed with registrar who is ordering a quick mri to see what is going on. I go back in 2 weeks for results - assuming hospital have got their act together and scan has been done!
When results are in, rads may be an option again or a referral to the neurological surgeons at the hospital in Preston. This is where I want opinions - please can anyone private message me if they know who or where are regarded as the best in the field? I know Preston are supposed to be excellent but just want to be armed with lots of info so I can feel in control !! I do have full confidence in my onc and her registrar by the way, after all they’ve got me this far!!
Thanks a lot for any opinions/advice etc
Liz
Thanks a lot to Lemongrove and Dawnhc for their messages and to some others via facebook. Quick update - I am still waiting to be given a date for the MRI scan. Chased it with the hospital this morning, told to ring back this afternoon. Did just that and they said they hadn’t had my card back from radiologist to be able to make the appointment. I told them I have an appt on 26th for the results but the woman said scan won’t be done this week and next week isn’t looking too promising either… Told her I have spine mets and they want the scan for possible progression and compression but she just said ‘Oh, well you could ring tomorrow to see if we’ve made you an appt but we may not have done’. Great! Anyway, Paris calls this weekend so I’m excited about that.
Liz
Hi Liz
Hope they get this sorted for you ASAP, I haven’t got any advice to offer so just offering my support. Enjoy Paris, isn’t it the Tour de France this weekend, or is that why you are going? Our youngest has just spent three years in Paris at uni so we know it well! Any top tips, let me know and I’ll try to re find this thread later this week!
Nicky x
Hi Nicky,
I am indeed going for the last stage of the Tour!! Have watched race on TV for years and after losing 4 friends in 3 months I decided to go on the spur of the moment. OH didn’t want to go to Paris again (we were there in late May) but Mum was game so we will oggle the athletic men in tight lycra, do some culture and indulge in a spot of tea and cakes…you have to, don’t you??! Lucky you having had a child at uni there and what a great excuse to visit!
Thanks for the support x
Hi liz
You are so right to get on and do things like this. OH has always followed the Tour on tv, and even did an Etape a few years back, so we are following Team Sky all the way to the finish. Cheer on the boys for us LOL. And enjoy the City of Light.
Nicky x
Tried to start a new thread but it’s not working again…
After my scans and meetings with onc and registrar, I am going to Preston on Monday morning to see neurosurgeon with the likelihood of vertebroplasty on T9 in the afternoon assuming surgeon is happy to do it and I am happy to go ahead. My onc thinks it will help with the pain as well as prevent further collapse with possible spinal cord damage and I trust her implicitly.
Has anyone any advice/tips/hints with regard to the ‘op’???
Thanks
Lizcat couple of comments (if you think it’s none of my business, please just ignore me).
If you have already had radiotherapy to your T9 vertebrae, and they are now planning to do a vertebroplasty on the same area, doesn’t that mean that T9 is springing back into action? I mean if you are experiencing new pain from that area, doesn’t that suggest the metastases is growing again / is recovering from the radiation given. If that is the case, doesn’t that mean your current drug regime may not be working, and that you require a review of your medication?
Just a thought, but would it be possible for your Consultant to arrange a biopsy to see if your receptors have changed. I know I keep harping on about this, but it is very common (happened to me), and this information is necessary to get the right treatment / ensure that you don’t get the wrong treatment.
By the way, if you can get to London, I would recommend either Charing Cross Hospital (I also know several people who receive excellent care at the Royal Marsden). I never have trouble getting scan appointments, because the second I mention that the Prof requires the results by such and such date, they quake, and get things done straight away (because he gives them a rollicking if they don’t). Also the Prof at Charing Cross is very progressive, and willing to do things like biopsies - whereas some are a bit stuck in the past and are reluctant to do things like that.