Not good news but no explicit bad news; just “it’s complicated”!
I had the MRI brain scan last Sunday (26th June) and the consultation with Dr. Hatfield today (28th June) because I emailed Kate Casey to tell her I didn’t have a scan follow up consultation appointment and she booked me into the very next clinic.
Because of the short period between the scan and the consultation the scan “has not been reported on “. Which seems to mean that the Consultant Radiologist has not scrutinised it thoroughly, nevertheless Dr. Hatfield said that nothing new had jumped out at him looking through it. The implied news being no new tumours!
Now for the “it’s complicated” bit. While there were/are no new tumours to treat they have now treated the two old areas twice. That is the original tumour excision site in the Cerebellum and the 10mm tumour in the Optic Chiasma that they found and treated in March when I mentioned the flashing stars that I first experienced in Costa Coffee in The County Hotel in Durham in Feb 2015.
The next scan was clear, and a good job too as I was in Chemotherapy March through August. The sites had shrunk more but the VMS or seizure as Dr. Hatfield has characterised it means I have been put on Keppra (Leviteracetam) for the duration.
The next scan in November at a nominal nine months wasn’t clear. And almost a year on two new tumours had appeared next to each of the previous tumour sites. As the Gamma Knife had been ‘refuelled’ and upgraded they could treat the two sites, when previously we had been told that the Gamma Knife was a one-shot treatment device. So within two weeks I was back in/under the Gamma Knife.
This three month checkup time around, this time being June, the results were not a qualified all clear. Actually this is where the quote “it’s a bit more complicated” came into play. The follow up consultation was just four days after the scan due to Kate the manager’s intervention when I raised the concern that while I’d had the scan appointment a month ahead in good time but I didn’t have a consultation letter. Dr. Hatfield opened by saying that the scan “had not been reported” but looking at it he did not seen any obvious sign of new tumours. But there is a “thickening” to one side of the original surgery site and changes in the optic site. This time Dr. Hatfield was adamant that this time re-treatment was absolutely not an option. So no obvious new tumours but changes around the original sites that are impossible to determine are due to new disease activity or due to scarring cum healing going on. Only time will tell, so its the start of another three month period of marking time and waiting.
In response to my feedback of the trend of headaches following the last treatment that receded and then increased again through late May into June Dr. Hatfield has put me onto a week of low dose steroids, Dexamethasone, and then ‘weaning off’ it over three weeks. Unfortunately over the next couple of days the low dose of steroid did not resolve the headaches.