For weeks I’ve been holding onto a photo of of the operative MRI my neurosurgeon had shown me after the surgery. Desperate to share it given how dramatic it was but it looked too good to be true and despite the evidence I just wanted confirmation before opening it to the world.
My next MRI was 4 weeks later, 6 days ago. On Thursday I went in to see the results. I’m so glad I waited because I l can now share even more.
The latest MRI scan was at my NHS treating hospital, the Royal Marsden so my oncologist was comparing this to the last one I had there in August, 3 weeks before the surgery.
After looking at me in astonishment, he said the comparison shows a 70% reduction in the size of the tumour.
70% from the surgery alone.
He then said “It could have been different but it turns out you made the right decision”.
He was referring to the fact that I’d had to find a different hospital because it wasn’t an option on the NHS. It wasn’t an option because any surgical procedure for me, even for a biopsy was considered too high risk with no benefit.
A surgery I therefore had to fund privately myself at a different hospital with the help of everyone who donated. But even then I was told it would be limited to a large biopsy (20% if we were lucky) and did I really understand the risks as “no-one pushes for this surgery”.
Seeing him so delighted was a real testament to the level of understanding we have for each other’s constraints and wishes.
There’s no way he could have done anything differently beforehand, even if he had known exactly what was going to happen. It just wasn’t something he could have offered so there was no gloating on my part and no bruised ego on his. Just pure joy and relief.
Relief knowing that persevering with 2nd opinions, getting all the facts including the risks, taking my time to assess what I was comfortable with and then trusting myself with that decision has been worth it.
So what next?!
The huge reduction means I’m in the best possible situation but given how large and aggressive it was in just the 3 months from April to June this year, the 30% that’s still there could progress again very quickly.
The tumour tissue from the surgery has already been sent to a diagnostics clinic in Germany to understand if and what other clinical treatment options there might be based on the specific mutations and variants they find within the cells of my tumour.
This analysis takes time though and I won’t get the results until at least the new year. After that, I’ll be pulling everyone together, this means my treating UK oncologist, the diagnostics and oncology team in Germany and anyone else involved in my care, into a virtual meeting to discuss the results and the best plan forward.
And in the meantime, working on the 30%, will be my 6 weekly cycles of chemotherapy. I started again yesterday and you never know what that alone could achieve!
I’ll keep you posted!