Brain Mets SRS - update

Posted By
Simon99
11/7/2017 2:32pm
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Replies: 6

Ok so its not much but its our first forward step.

We actually got somebody face to face. A private hospital The Spire Southampton only a first consultation but a least the guy was down to earth, positive about radio therapy and wishes to talk to a radio physician. 

I asked how long till we hear and he said it should be quite quick.

I wont waste words at this point because there is litttle else to update - but thank you all for the inspirational posts and information you shared to help me get this far.

Will update as things evolve. 

Simon 

This is good news. My fingers are crossed that things continue to move forward in a positive direction! Face to face........ it challenges a doctor to be impersonal once they've had to look you in the eyes. 

Mark_DC - (11/7/2017 - 5:12pm)

Good news -- I was a little skeptical about The Spire Hospital -- but they seem to be doing the right thing. Also the link someone found to the place in Sheffield that does SRS seems very relevant. I think there is another centre in the UK that does this too. But this is what your wife needs. I just hope there is space and she can be seen quickly. Please keep us posted Simon. And, being British, I would like to know what the issues are, whether its medical issues that prevent treatment or the NHS. I was particularly disappointed by the Royal Marsden response but maybe Dr Larkin did not even get your request?

Good luck and keep going

Mark

doragsda - (11/7/2017 - 6:18pm)

Best of luck to you and your wife.   I  had posted the link to Sheffield in the other thread, and I may have found an answer as to why they were reluctant to treat her - link at the end of this post.  It appears they are trying to expand capacity, but they only had the ability to treat 2400 patients with SRS in all of England in 2014-2015.   This is likely the reason they have much more stringent guidelines than we have here in the US, and why they won't treat a 3cm tumor there but will here.   Keep pushing and you may want to also look to France and Sweden.  Good luck..  

https://www.england.nhs.uk/2016/06/brain-tumour-treatment/

CancerSpouse - (11/7/2017 - 9:17pm)

Simon, pulling for you and your beloved. ~ Carol

Mark_DC - (11/7/2017 - 10:30pm)

Me too but I think doragsda has cracked it - the link she providdes and the comments from patients probably (we dont know) explain what is going on. I hope you can plead your case in person and get the SRS for the brain then more keytruda for the rest. If you cannot get the SRS in the UK then i fear you would need to consider Europe or find some good doctor in the UK who has contacts in Europe and can do it, but it will surely cost you. Unless the doctor is creative or the NHS pays for treatment in Eirope while it is still building the SRS machines (which would make sense).Then you need to have a commitment for keytruda back in th UK for the rest.

am very sorry for what you are both going through and sad too about our NHS

like many others here, am thinking of both of you

Mark

sgreenberg - (11/7/2017 - 10:28pm)

Great to hear. Good luck, and keep up the pressure!