Other post and worst get worst hey nephrectomy last Nov and was treating lung with immunotherapy working well. Then had cryoablation last week with new legion on remaining kidney with well enough but then a trip from to hospital upshot is I have brain cancer, bit of a shock!
waiting for still see what treatment I can have very scary here, sending loves to all those going through this, if you have any words of help do x
I had nephrectomy in February as I was recovering and they told me they got all the cancer. I started to lose balance etc. 2 scans later and I have stage 4 brain mets that is inoperable due to location. I’ve had gamma knife radiotherapy but I need another scan as 8 weeks later I can’t get off the steroids and worried that the tumour and swelling having responded. Life is pants at the moment
I'm really sorry to this all sounds a shock I don't know what treatment to expect but I don't think it's going to be great. Mine is inoperable quite big at 3.6cm. I have just started in steroids so will see how that goes. I wish you well keep me updated and I will let you know what they tell me next week. Take care
I will do, mines about same size and right in my midbrain. Will update after MRI next week. Take care and try not to worry.
H@piper952 KLM000, sorry to hear re your brain msts. I had one in 2013 which was treated by cyberknife thankfully.
Hi, I agree about it being the fear of the unknown, I'm scheduled for gamma knife treatment next week and I'm more terrified of the surgery than I am of having the growth in my head.
Hi Francesd, don't b fightened of the gammaknife. I almost had it last year, ie got as far as the planning MRI then they decided I didn't need it after all.( Long story!)
I went to UCLH, the staff there were marvellous. I even got cake n tea afterwards.
It's not the pleasant of procedures but it is better than having a tumour in your head n all that involves.
Sorry about how frightened you are must be hard. So I have found out I am going to have 5 days of intensive VMAT radiotherapy to target the large lesion In my head, it’s 3.3, 3.6 by 3.9cm so it needs 5 doses 1 each day prob starting In 10 days side effects they say pretty grim sickness hair loss etc and they won’t scan me again for 3 months as it can take that long to work that’s hard I can tell you and obviously they will be keeping any eye on symptoms and how I am doing. I am on high strength steroids now obviously to keep swelling down. I can’t believe how everything escalated so quickly not long ago I was worried about lung mets and then a new lesion on remaining kidney which was removed but now least of my problems and it’s the brain. Immunotherapy has cleared lungs ironically, No one can tell me how long I have it’s very difficult and of course I hope that the treatment will shrink the tumour and give me more time but who knows they can’t cure it. I am scared and frightened can’t lie but trying to stay positive. I have a smaller lesion of only 1mm as well in head but not as worried about that at the moment as soo small, small mercies hey.
the most surreal week I can tell you and Covid can do one fed up with all that sure you are too, just want some normality in my life. I hope up you are all doing ok sending my thoughts to you all thank you A
Good luck piper952 re your radiotherapy. I now know how lucky I was to have cyberknife in mine.
Hello again Francesd, there's a post re gammaknife in Brain, secondary cancer group
Hi so I start intensive VMAT on 24 June for 5 days best option for the brain mets. Scary stark outlook but as I have said before they just don’t know, weirdly I feel ok strange hey. They are hoping to get me off the steroids quickly after radiotherapy so they can look at giving me more immunotherapy to help with the smaller lesion in head. I hoping it works odds are 80% chance of controlling the brain met and and 50% chance of shrinking it. Keep everything crossed won’t you, if only that would help. A
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