Weeks after my oncologist referred me to the Royal Marsden for Cyberknife stereotatic RT to treat my five brain mets, I’ve just heard from the Marsden (after chasing them), that they won’t even see me because as a matter of policy they will not treat more than three brain mets with CK.
Why the hell didn’t they tell me this weeks ago? Don’t medics understand that brain mets are not the sort of thing you put on hold? Also why the hell did my Oncologist refer me in the fisrt place when he knew that I have five brain mets and CK can only treat three? More to the point why the hell did I let him refer me, when I already knew that CK is not used to treat more than three mets. Guess I thought that the policy might have changed, and that as an Oncologist he would know … bad time wasting mistake.
Have now asked the radio-oncologist at Charing Cross to refer me to the Cromwell Hospital for Gamma-knife, as I know it can treat more brain mets than CK. But at this rate they will be too big to be treated with anything.
Goes to show, don’t assume medics know what they’re doing - that’s just wishful thinking. Check, check and check again.
Oh Lemongrove, what a dreadful situation for you. I was just catching up with the forum and read your post. Didn’t want to read and run. It just goes to show that we have to be proactive and on the case with treatment - although at a time when we are far from at our best. You have done so much already and still come up against needless hurdles. It seems nothing can be taken at face vaue with bc and that staying in touch and on top of treatment is so important in ensuring that we can take some control over the craziness. I really feel for you. Sending lots of love and hoping that the Cromwell comes up trumps xxx
Oh Lemongrove! I can only echo what Southcoastbeachgirl says. I’ve had my own problems with competence levels at my local hospital so I can really sympathise (although in my case it was progressing lung mets being ignored). Here’s hoping the Cromwell appointment comes through quickly.
And I can only repeat what’s been said above. I really hope no more time is wasted now and the Gamma-knife appt. comes through quickly and that tx does the trick.
Lemongrove, hope you get the Cromwell treatment VERY soon - you’re right about checking up on things yourself.
‘Once bitten, twice shy’… I am learning! If your medics suggest something ask ‘why?’ and also ask ‘why not’? And get them to double check information, because they aren’t infallible and mistakes which hold up treatment can be so detrimental to the patient.
How dreadful to only find this out after having to chase them. I wonder how long it would have taken them to get back to you?
Hoping the Cromwell hospital gets back to you asap and the treatment works well.
Sorry to hear this Lemongrove. It’s horrible when things like this happen. I hope the Cromwell referral goes through quickly and that the GK works well for you.
Can I ask if you have private insurance or is it through the NHS? I ask this because fortunately I’m coved by my works BUPA insurance, but my onc tells me that the most hospitals which do the cyber knife technique will only do 3 or less but if you are private they will do more. I myself have/had 8 tumours and although i initially had 2 weeks of full head radiotherapy at Christies, I went to Cromwell for the gamma knife procedure. This has been successful for me as one has disappeared, most have shrunk and one has stayed the same.
Good luck for the future and hope you manage to get some ck treatment very soon.
I’m so sorry to hear your news and the wasted time you have experienced. Its bad enough dealing with having brain met/s but to have this on top must be awful I was diagnosed with secondary brain met 2nd week in Feb and was told I would have targeted radiotherapy in week or so. However, I’m not convinced it will be enough and I am now looking at the cyber knife option. I have only one brain met (3cm) so it sounds like I should be eligible, but its now waiting for our next meeting with the oncologist to get all the facts so we can move forward with a second opinion. Do you know if the cyber knife is actually a better option than targeted radiotherapy ? ie. will it effectively remove/kill the “entire” tumour, or does it just do the same thing as the radiotherapy ? Thanks for any advice and good luck with your treatment. What is the difference between gamma knife and cyber knife ?