No evidence of disease

I’ve been sitting on this for a month now, not trusting to say it out loud until it was confirmed and reconfirmed 2 more times and then trying to understand what that means.

‘No evidence of disease’. When I was first shown this written in my MRI radiographer’s report in October I didn’t know how to react as I was too confused by it. They’d already told me in July they couldn’t see any tumour on the scan but seeming as they had also said there was still some small abnormalities around the surgical site I didn’t think that was conclusive.

Now they are saying there is absolutely nothing on my MRI scan at all. It looks exactly the same as a perfectly healthy person. Well, apart from the massive black hole in my brain where my right temporal lobe should be of course.

This blew my mind. My post-surgical report from my Neurosurgeon which included the results of an intraoperative MRI stated in black and white that there was ‘a few percent left’ of the tumour because it was considered too risky to remove without damaging my optic nerve. We then found out after that it was Glioblastoma, one of the most aggressive forms of brain cancer with the worst prognosis. 

But now, a year on, there is not even a slither of abnormality showing on my scan. 

Obviously my first question repeated many times over was, are you absolutely sure? To which the answer was and continues to be from all the opinions I have sought, a resounding, no questioning, yes. 

But what does that actually mean? This it seems is more tricky to answer especially with how deep you want to get into it.

At the highest level it’s the best result of a scan anyone with cancer can have. All visible signs and symptoms have gone. Wow.

But that definitely doesn’t mean I don’t have cancer anymore. Hidden cancer cells are undetectable by our current imaging capabilities and when you have Glioblastoma it’s pretty much a given that they’re there. But if they were active they would be spreading and forming more tumours which they’re not and so essentially if they’re there they’re redundant for now and if the immunotherapy works there’s a possibility that they’ll stay that way.

So what happened to that small percent of tumour left from the surgery, how has that just gone? 

What I found out is it depends who you ask. One hospital team says my type of malignant brain tumour can only go through surgery. Their view is that the Neurosurgeon must have miscalculated and despite thinking that he hadn’t, he actually did remove the entire tumour which is why there is none left now. 

But this contradicts the Neurosurgeon himself who says he deliberately only ‘debulked’ the tumour during surgery, removing the vast majority but not all of it. He could see abnormal brain tissue around my optic nerve and avoided taking it out because we had agreed it was too risky. Following the operation him and his colleagues have even shown me on the intraoperative MRI the area of abnormality they left. Their view therefore is this remaining last bit has disappeared through one or more of the treatments I have had following the operation. They say that whilst it’s very very rare, it could and has happened.

I have spent weeks of obsessional thinking about which of these two explanations is true and I have sought 4 different opinions to try and get a definitive answer. It appears however that there will never be a consensus although part of me thinks that when someone, especially a doctor, doesn’t allow themselves to believe in rare medical miracles they’re never going to find them.

I am repeatedly told even by myself, that THE most important point by a long mile is that everyone including all 4 opinions agree that there are no signs or symptoms of cancer which leads me to the last definitive statement I forced my doctor to confirm.

I am in remission. And not even partial remission, I am in complete remission.

I honestly didn’t think it would be possible for me to say those words but I pushed my Oncologist to give me the full definitions and then confirm this represents my cancer status which eventually he did.

The reluctance wasn’t because he didn’t agree but rather he didn’t want me to get my hopes up to thinking I was ‘cured’ or worse, telling other people I was or they could be. Which I’m not because it can / will come back. He didn’t want me to think it was like other cancers which can go and never return.

I understand his caution to manage expectations but when it’s not active in this moment, if there’s no evidence or symptoms or disease, then why can’t I use those words that defines exactly this.

As a patient with a stage 4 diagnosis we need to be allowed to grab any success, hope and encouragement to keep being positive and striving for a day soon when there is a cure and it won’t come back.

I know I might have further to fall but who wants to be stuck in the reality bog when you can be soaring above the clouds dreaming in a buttercup filtered sun.