I'm writing briefly for those of you who may still be waiting for the notes from my presentation at the 2014 CCN conference on patient-centred care. I still have the powerpoint slides on file, but it doesn't seem possible to upload ppt files to blogger, so my plan was to cut and paste text and images from the files into a blog post, and to elaborate on each slide so that a written version of my presentation would be available.
I'm still hoping to do that some time, but that will depend on the results of my most recent brain scan, and my visit to a new neurosurgeon for a second opinion tomorrow.
I was found to have a new tumour (in the right temporal lobe) on January 2nd, and it was removed four days later. We were told the post surgical MRI showed no residual tumour or perioperative infarct (bleeding). The histopathology was "the same as before", presumably that meant GBM. The neurosurgeon said that the Gliolan hadn't helped identify any tumour that he wouldn't have seen with the naked eye or stereotactic imagery.
I saw the neurosurgeon for a review on February 3rd, and he indicated that he debunked most, but not all of the tumour because it was growing in the lateral ventricle, and he didn't resect absolutely all of it because he didn't want to cause me any impaiment, or to adversely affect my quality of life. I wish we'd spoken about the neuropsychology of the right temporal lobe, because I supervised several (as yet unpublished) postgraduate research projects that looked at neuropsychological outcomes after epilepsy surgery for patients with hippocampal sclerosis. The data consistently showed very little neuropsychological impairment for right temporal lobectomies, with a minimum period of 6 months between surgery and reassessment. People undergoing left temporal lobectomies tended to have more problems, with decreases in verbal memory function and confrontational naming abilities. So, on the basis of at least 3 students' analyses of pre and postoperative neuropsychological data, I would have told the surgeon to not worry about my right temporal lobe, and that I could cope with possibly developing impairment in visual memory after surgery. This would affect my quality of life far less than living with the knowledge that there still may be residual tumour left in my brain after the most recent craniotomy, and that it can't be treated with temozolamide (a form of chemotherapy) because I had a severe and prolonged pancytopenia after receiving that drug for 4 weeks in 2013. Also, it is possible that the region of the most recent tumour may not be able to be irradiated because I've already received radiation in close proximity to it, and because the tumour was close to the medulla, which apparently can only receive a certain level of radiation.
The question of radiotherapy is a technical one, which hasn't yet been answered. The current treatment plan is for me to have Avastin, an anti-angiogenic agent that stops tumours growing their own blood supplies. It also impairs healing of wounds, so I'll have to postpone the prophylactic mastectomy that I'd hoped to have early this year (My remaining breast was normal on two MRIs last year, but I wanted it removed, just to be safe. Now it's the least of my worries in the scheme of things)
I have no idea what tomorrow will bring. I haven't heard anything about the results of yesterday's MRI, and I don't want to see the images until I'm sitting with the neurosurgeon who can interpret them for me and give me advice on what to do next.
I hope to be able to start sharing my presentation notes and ideas soon, it will be good to have a project to work on, other than the one of trying to improve my health.
Updates on my thoughts and experiences will continue to be posted at www.neuroboob.blogspot.com