Well I’m in utter despair today, and don’t have a clue how to proceed now.
As peeps will know from this thread, over the past few weeks Charing Cross Hospital have been saying they have concerns about referring me for more Cyberknife or Gamma-knife because my brain metastses are located close to where I had Cyberknife for skull metastases in 2010 (and treating the same are might cause over-exposure). Because of this I contacted the doctor who treated my skull mets with Cyberknife in 2010), and asked if he felt the treatment I had in 2010 would preclude treating brain metastases in that area. He said he couldn’t see any clinical reason because they had minimized radiation to the brain, and that if the NHS wouldn’t do it, he would sort it out.
I was naturally very pleased about that, because it supported my view and gave me the option of private treatment as a fall back position. However, I then made the fatal mistake of telling Charing Cross what the doctor had said. As a result they have completely changed the goal posts too justify their position. They are now saying that I don’t have five brain metastases at all - what I have are three skull metastases growing into the brain. Consequently, treating the the area growing into the brain would mean treating the skull - and as the skull has already been treated they feel it would be too risky to do it again.
So I’m completely stumped now and don’t yet have a clue what to do. I know full well the problem is not skull mets growing into the brain, because I have had numerous scans and none have mentioned skull mets getting bigger. Therefore how can they say I have skull mets growing into the brain without any sign or them actually growing or changing?
I’m now worried that if I go to a private hospital they will contact Charing Cross, and refuse treatment simply on the grounds of what Charing Cross have said. In fact, that seems to be happening already, because I immediately Emailed the doctor who treated me with CK before to take him up on his offer, but when his Secretary rang this morning she said he had said to tell me that he was in contact with the Prof, and was fully aware of the situation. In other words, it sounds like the Prof has already told him that he doesn’t agree with treatment and doesn’t want to be undermined.
I have also written to my GP to say that in view of the misdiagnosis, sloppy management of my case, delay and muddle, I no longer wish to be treated at Charing Cross and have asked to be referred to the Royal Marsden intead. I have said that I want a second opinion and want the Marsden to look at my case completely afresh. My only hope is that the Marsden agree to take me on, re-evaluate my scans and disagree with the Prof.
I cannot begin to explain how upset and let down I feel about this. They have not carried out any dosimetry and therefore have no evidence to support the view that more treatment would cause over-exposure. What’s more, It has taken them almost eight months to reach this unfounded decision - and during that time, I have had to endure months of misdiagnosis, sloppy management, disagreements about approach, terrible advice and dithering -when what was required was prompt action.
I now feel like my life-line has been cut, and my only hope has been taken away. What’s worse is that the Prof doesn’t seem to understand how resentful I would feel if I had to accept the treatment he is now proposing (i.e, stay on Lapatanib Capecitabine until it fails and then have WBRT). The fact is, if I had to have WBRT, knowing that when my mets were small and potentially controllable, I could have had stereotactic RT and posibly avoided WBRT together, I would be in total despair.
While writing I must apologise to Ponsmuir because I met up with her at Charing X Hospital yesterday, but rushed out without a goodbye. I wasn’t being rude, I was just on the verge of tears and didn’t want to make a spectacle of myself.