Hi
Good morning ladies, great weather London’s supposed to be 88 today!!
Just wondered if anyone has heard from Lemongrove as I’ve been thinking a lot about her lately??
xxxx
She has just commented on a thread about two mins ago xxx
Mackers I’m still here. Read your post too quickly and thought you said Lemongrove is supposed to be 88 today. I might feel and look like it sometimes, but I’m only 59. 
Thanks for enquiring - very thoughtful.
Hi
I don’t often post but always think about everyone…
How is your situation with the cyberknife issue… Any news?? How are you feeling as know you weren’t feeling too good.
tracy xxx
Glad someone asked that question because I was thinking that we hadn’t heard from you for a while!
Hope you are coping with latest symptoms/treatments ?
suzanne x
I’m OK and the Lap/Cap combo seems to be holding the brain mets at bay. The Prof who manages my treatment referred me to the Marsden for Cyberknife, but the Marsden declined to see me because they were under the impression that I have five brain mets (and they only treat a maximum of three with CK). This was very annoying because a new Neuro-Oncologist at Charing Cross has since reviewed my scans and decided in fact I do only have three. Had they decided this before, the Marsden might have seen me
Anyway when the Marsden declined to see me, I asked to be referred to the Cromwell for Gamma-knife, which is also a form of stereotactic RT, but can treat more metastases. The main difference between Gamma-knife and Cyberknife is that Gamma-knife is only used to treat head and neck cancers whereas CK can treat cancers virtually anywhere in the body.
I did think of asking to go back to the Marsden but decided to stick with pushing for a referral to the Cromwell. This was for two reasons (1) The MRI at the Cromwell is much more sensitive that either Charing Cross and the Marsden, so if they discovered more mets, they could treat them. (2) Its easier to get funding for stereotactic RT for brain mets, than mets elsewhere (in fact since NHS England took over specialist funding since 1st April, they only fund stereotatic RT for brain mets and inoperable lung lesions).
Needless to say there has been a lot of dithering over whether I should be referred. Trouble is while most of the medical team feel stereotactic is the way to go, there is one ultra-conservative doctor who seems adamant that I should have Whole Brain RT. This is a major problem, because the first requirement for specialist funding is that there is consensus amongst the medical team that this is the best treatment. Again very annoying, because I actually meet all the other requirements and am confident I would get funding.
Anyway I’m equally adamant that I’m having Gamma-knife, because WBRT offers no survival advantage, and is merely palliative. Sterotactic on the other hand does potentially offer a survival advantage, and if I’m very lucky and there are no other unseen brain mets, it could knock out the existing ones.
Charing Cross must hate me because I’m so pushy (both the Prof and secondary BC Nurse say they have never received letters from patients before). But what is the alternative? Should I just lay down and die?
Certainly not!!! keep pushing. It’s your life x
Hi,
Life is hard enough, without all the other obstacles… Think your absolutey right about your potential treatment plan and why should you just accept anything else!
Best of luck, your in my thoughts… A lot …
xx
Hi Lemongrove. Good luck and do keep pushing for the treatment you want. I strongly believe that we are our own best advocates and that by being well informed about the various treatment options (which clearly you are!) you are in the best position to get what you deserve. I sincerely hope it won’t be too long before you are giving us the good news that you’ve got your treatment plan in place.