As promised I said that I would let you know what questions we asked and their answers - as best I can.
First, we spoke to my son's oncology consultant as he has carried out the two SRS treatments for brain tumours in the past, and it was him who had put forward the possibility fo SRS to treat the large tumour embedded in the middle of my son's spinal chord.
We had huge concerns about going forward with this the biggest cause for concern being the amount of swelling that would occur as this is a big tumour - I am not sure of the size but we do know that it is sizable - and the damage the spinal chord could suffer due to the swelling but also the intensity of the radiation as the tumour and the spinal chord are almost one it is so embedded.
We were right to be concerned, as we were told that, upon discussion with colleagues, it had been decided that due to the size and how embedded it is in the chord SRS was far too risky.
Simply put, SRS would be to severe, and would most certainly cause damage to the surrounding spinal chord, the size of the tumour to great meaning that the swelling caused by SRS would bring it's own set of problems.
An alternative has been put to us - radiotherapy. This will entail daily treatment Mon-Fri for 6 weeks. The reason this has been put forward is that unlike SRS radiotherapy delivers a much smaller amount of radiation, allowing the surrounding tissue, spinal chord in this instance, to recover before the next treatment. We have been told that this will not shrink the tumour, at best it will stop the tumour from growing any further - we hope.
There will still be some swelling with this, so my son will be put on a course of steriods to try and control this.
Second we spoke to my son's neurosurgeon about the suggestion of radiotherapy. He agreed with the decision, as although surgery is a remote possibility, it will destroy the chord at that point, therefore not really viable until there are no options left available to us. He felt radiotherapy is my son's best chance at retaining the mobility he still has, and agreed that SRS would not have been a wise choice.
Third - I wrote to NIH/NINDS and also to Dr. Lunsford, both parties were more that happy to review my son's scans, but we feel confident that the direction our consultants here are taking is the best. I still have the option of sending the scans, and would do so if I wasn't confident in the outcome of out discussions.
So tomorrow we have a planning appointment, another opportunity to ask questions about radiotherapy and to air any further concerns. We will also get the start date for treatment. I will post again as time passes to let you know how treatment is going.
Please keep my son in your prayers.
Thank you
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