Just by chance we met up with the Consultant Oncologist a couple of weeks ago following the Hammer Out meeting at Cheltenham. This was a very useful few minutes. He explained that the MRI scan is showing what he thinks is scar tissue. He cannot rule out the presence of Lymphoma cells but that if there are any present then they don't make up more than 1% of what is showing on the MRI (as of the mid-August scan). The August MRI results were the same as those of the May MRI from which he concluded there is no active disease (i.e. if there are any Lymphoma cells present they are currently dormant).
The Consultant went on to explain the reasoning behind some of the resultant symptoms Colin is still experiencing. These are due, in part, to the positioning of the scar tissue i.e. the centre of the brain, which is affecting the communications between the LH and RH lobes. He drew the analogy that this was like having a rail crash at Clapham Junction rather than one at Cheltenham station! We have drawn the computer analogy that it is like the CPU (in a computer) having some of its circuits broken and connections to some peripherals are not being made correctly.
When asked if there were dormant Lymphoma cells present and they became active, how long it would take for a mass lesion to become a problem, the Consultant said this could be somewhere between 3 months and 5-6 years! But whilst Colin is experiencing similar symptoms now (due to scar tissue) as he did before he collapsed (due to the tumour) any changes due to regrowth would likely present themselves as the worsening of these symptoms (and maybe new ones). So we are likely to have some warning before things get out of hand.
CHANCE OF MISDIAGNOSIS: One thing that we forgot to mention in our previous blogs is the chance of a misdiagnosis of something other than a brain tumour! We have discovered that GPs very often make diagnoses of stroke or degenerative brain diseases (like dementia) when in fact a patient has a brain tumour. We have even met someone who's husband died of a brain tumour after having been unsuccessfully treated for a stroke for the best part of six months! One of the reasons of including as much detail as possible in this blog has been to try to educate the general populace to become aware of brain tumours - there appears to be so little awareness and such a lack of funding into research and yet anyone, of any age, can develop one.
In the meantime, the latest results from the Consultant Haematologist at Worc Royal are that Colin's haemoglobin levels are still low enough to be cited as 'just anaemic' and creatinine is hovering around 107 (just about normal although nowhere near as low as it was before the Chemotherapy commenced!). So monitoring continues and the next appointment is beginning of January. Sometime around end of November should be the next scheduled MRI scan as the appointment with the Consultant Oncologist at Cheltenham has already been arranged for early December. And last, but certainly not least, the Headway Occupational Therapists have kicked in with some useful practical help - they certainly understand head injuries and how to help people develop coping strategies to enable getting on with life!