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Jan 13, 2010 03:11AM
Hi Lisa-and welcome. As Elizabeth said, I'm the other Brit on board-good to see you here, but sorry you had to join us. I have a feeling that I may have seen you on the pals board, which is the other forum I use?
I'm not in your situation, although have mets to pleura, liver and bones, so have some vaguely similair treatment options for some of the mets, I imagine.But can't help with the brain mets issue,I'm afraid....
As to the difference in treatments between the U.S and G.B? Well I've been posting here for over 2 years, and from what I can understand they do seem to be slightly advanced in some things-ie, trial drugs may be at phase 3 rather than phase 1, for example. But overall, we are doing not too badly here-the gap is certainly closing. So far I haven't felt the need to consider going to America for treatment-and certainly several years ago, this seemed to be an option for quite a few people who were presenting with unusual cancers.
Where we are different-thank goodness, as it breaks my heart, when I read the posts, is in the care we receive. No worries about who will pay-we get all we need, with the only potential exception being drugs which aren't as yet approved by NICE. We are so lucky in this respect. The American girls often have to fight all the way for drugs and tests-not what we need at this stage. The other difference I've noticed is that they do get test results quicker-but they can phone and ask for them to be conveyed over the phone, or pick up paper copies! Eeeeeeeek!!!!! Again, I'm more comfortable waiting slightly longer, and then having a face to face consultation with my onc who explains the findings in detail.
So, overall, I think we are doing fine on this side of the Pond. Have confidence in your team-they will find the best options for you. Failing that, as I'm sure you already know-or if you have any doubts-it may be worth consulting with the Marsden. No doubt I will do this at some stage-when I feel we're coming to the end of conventional options.
Please feel free to pm me if you want to chat in general-about anything. I can relate to the feeling of loneliness-it is a lonely road to travel for us all, in one way or another. But would love to get to know you and chat some more-we may even be close enough to meet in person, if you feel able? I'm a Scot living in Devon (Exeter)-and my primary cancer was treated in Scotland, so have a variety of experiences re locations which may help. Good luck to you-and hope you feel a little less lonely now you have found us. I'm sure we must have someone who has similair mets to you? But there goes chemo brain again.....I can't think who fits the criteria!
11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+