MRF-Logo2019-Horizontal-RGB
Brain Mets SRS – update
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Brain Mets SRS – update

› Forums › General Melanoma Community › Brain Mets SRS – update

  • Post
    • November 7, 2017 at 7:32 pm
    Simon99
    Participant

      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 

    Viewing 2 reply threads
    • Replies
        • November 7, 2017 at 8:46 pm
        cancersnewnormal
        Participant

          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. 

            • November 7, 2017 at 10:12 pm
            Mark_DC
            Participant

              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

              • November 7, 2017 at 11:18 pm
              doragsda
              Participant

                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/

              • November 8, 2017 at 2:17 am
              CancerSpouse
              Participant

                Simon, pulling for you and your beloved. ~ Carol

                  • November 8, 2017 at 3:30 am
                  Mark_DC
                  Participant

                    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

                  • November 8, 2017 at 3:28 am
                  sgreenberg
                  Participant

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

                Viewing 2 reply threads
                • You must be logged in to reply to this topic.
                About the MRF Patient Forum

                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                Popular Topics