Trying to forget

Forget everything you thought you knew. Forget the last four years. The long prognosis. The conclusion that the brain tumour is inoperable. The oncology plan for when it turns malignant.

In my already uncertain future, things have become yet more unpredictable.

I have seen a new neurosurgeon here in Belfast. I went armed with my thick blue folder. Inside were the letters from three different surgeons telling me that my brain tumour was inoperable; the plan from my London oncologist to treat me with radiotherapy and then chemotherapy when things go bad up there. I made sure my London hospital had sent four years of MRI scans across ahead of our meeting.

In that blue folder sits four years of uncertainty that has nevertheless unfolded itself into a relatively certain plan. We may not know when my low grade tumour will turn malignant, we at least know the actions that we will take when it does.

We won’t prevent the inevitable, but at least we should be able to stave it off for a very long while. I can’t be operated on, but I will have the treatment I need to give me the longest good quality of life. There is comfort in knowing where I’m going, even if the eventual destination doesn’t look that attractive.

Well, forget all of that.

The Belfast neurosurgeon told me he would arrange an MRI for me, to fit into the six-monthly pattern I had become used to in London. That was a relief. I’d heard bad things about waiting lists for MRIs in Northern Ireland, but he reassured me that with brain tumours we sometimes have to jump the queue.

But he also said he saw no reason why he couldn’t operate on the tumour. If the scan showed areas of intensification, he’d open me up and poke around in there. During an awake craniotomy, he’d try to remove the malignant parts, as well as other parts of the tumour he can take out.

The tumour can’t be removed in total. That would be too much to ask, because the tumour is large, diffuse and intimately enmeshed with the left side of my brain. But he might be able to remove malignancy before it got properly started, and that had to be a good thing.

I sat there gobsmacked. I gasped for breath. I flicked through my folder, pulling out four years of letters. I told him of the other surgical opinions. But he wanted to see the tumour for himself, to get pictures from his own MRI department.

And there was more.

He suggested that he’d only use radiotherapy on my brain if the intention was to control my epileptic seizures. He wouldn’t use it to treat the cancer itself. Instead, it would be chemotherapy that would follow the surgery.

We’ll see after your next MRI, was the message, but the evidence shows that early intervention….

He’d already lost me. It was a comprehensively and wholly different plan from that had been previously laid out for me. Surely there can be no grey area between ‘operable’ and ‘non-operable’?

How could a handful of consultants disagree so dramatically about the same patient, the same brain, the same tumour, in the same place, with the same genetic make-up?

Of course, I do know that surgery is the preferred first-option for tumours of my type. But until now I’d been told that it was an option that just didn’t exist for me.

Ought I be jumping for joy?

People who have their tumour resected live longer, so I should be ecstatic. But three other surgeons have also told me it would be too dangerous to even try.

One told me he’d need to take out 90 percent to have any measurable prognostic benefit, and getting that much out just wasn’t going to happen. The tumour is wrapped around a main blood vessel, and runs into my speech and motor functions.

So, who do I believe? Do I go with the opinion of the surgeon I happened to hear first? With the one I trust the most? With the one who happens to work from the hospital closest to my home? The one I paid for a private consultation with, rather than saw on the NHS?

A good friend and fellow patient concludes: brain tumours are stressful and life changing enough without forcing patients to become gamblers, playing a game of eeny, meeny, miney, mo.

Perhaps I’ve become complacent and this is my wake up call. My wife no longer comes to my MRI results meetings because, we reckoned, we were far more likely to be told things remained relatively stable, than to be told that treatment needed to start. And when the tumour did turn malignant, we had already come to terms with where we were going. What the doctors had in store.

We were almost comfortable with the certainty.

With the surprise announcement that my tumour may be operable, that comfortable certainty has gone away. Now, that the surgeon intends to do nothing seems the best we can hope to hear. More likely (or maybe this is just how it feels) is that he will opt for ‘early intervention’ instead.

From where I’m standing, that option doesn’t look good. If that is where he wants to go, I won’t automatically go along with the plan. I’d need some pretty strong convincing that brain surgery really is worth attempting. But it all adds up to an almost paralysing stress to my forthcoming MRI scan, and that’s something I’ve not felt for a long time.

The future has become all hazy. I feel I can’t plan ahead. The clock has stopped and I’m just waiting.

I won’t wait for long. The MRI scan has been booked for next week, and I assume I’ll see the consultant within a few weeks to hear his conclusions. I’ve sent him the written opinions of the other three surgeons, just to make sure.

When he considers it all in the round – the past paperwork, the new MRI, the radiographer’s report, the latest research, with the support of his multi-disciplinary team – perhaps he’ll come to the same conclusions as my previous consultants have.

No surgery. The same oncology. Back to the plan. Nothing to see here. Move along. Go back to the uncertain certainty you had before.

Perhaps. Perhaps not.

9 Comments

  1. An interesting predicament Gideon, please do keep us up-to-date with how it goes if you feel able, I hope you find a ‘new form of certainty’ soon – even better if it’s a one which can prolong your quality of life. Since featuring in Living Low Grade, after 5 years of watch and wait I had a craniotomy myself in December. Mind you I was never told that mine was inoperable, just that the risks outweighed the benefits, with it being right in the middle. I’ve also moved around the country and been under neurology departments in Edinburgh, Cambridge and Newcastle, who have varied on things like how often I should be scanned. I do wonder if I still would have had the craniotomy if I hadn’t moved to Newcastle!

    Wishing you the best of luck.

    Angela

  2. Jeez! Might even be worth confusing matters even more and getting another independent opinion.
    What an enormous dilemma. X

  3. Wow Gideon I can’t believe it. You’re right, how can they differ so much but would a 4th, 5th or 6th opinion help? I think not. I send all our love and thoughts of support and im sure whatever lies ahead you will face with courage and support from your wonderful family xx

  4. What a difficult decision for you Gideon. Having read your book, I’ve always found your positive outlook refreshing. I was diagnose in 2012, watch and wait for a grade 2 Astrocytoma on my right parietal lobe. I was told its inoperable as if they touch it, I could likely have a stoke as its on my motor strip. I haven’t had a biopsy, the type and grade is only going by 4 years of scans. I am under the care of the neuro team in Edinburgh. I have been told as I think you had been, that If it enhances or symptoms get worse, the next step will be biopsy, radiotherapy, and chemo depending on the biopsy result. Having read this recent blog, does make me wonder what my future holds and whether the current plan is right for me. Please keep us informed of your progress, thoughts and decisions of your plans for your future treatment and whether you go for the craniotomy. Wishing you lots of luck for the future.

    All the best
    Pam

  5. Have you read/listened to Noreena Hertz on decision making/trusting experts/the God principle? Her book is called Eyes Wide Open and is based on a medical condition she had when she was faced with 5 different diagnoses and many more possible interventions. You might find it interesting. If you google her you can find a Four Thought radio programme or a TED talk. Good luck and big, big hugs. J oxoxo

  6. Low grade basically = unpredictable and medical opinion is divided anout treatment, that doesn’t mean that either course or advice has been wrong but just that there is merit in both. I know as an analytical and evidence based person as am I it’s hard to digest but there’s reasonable evidence on both sides. Good luck with your next journey x

  7. I don’t know what to say, this is confusing, makes one wonder are there surgeons afraid to operate in fear of the repercussions if all goes wrong (can’t blame them it is a gamble) or is the Royal Victoria right and it is operable this will be interesting to see what happens after next MRI. I don’t think you need to be worried about not being looked after properly in belfast if anything there a bit too over protective Mark has asked them to give us a break when he gets his biopsy results on Tuesday lol , good luck gideon take care I wish you all the best xx

  8. Gideon,

    I have read your latest post a few times now. After putting so much faith into the staff at Queen Square (and we have too, so that is understandable), you now have such a differing opinion. Hoping that things are clearer after your next MRI and you and your wife can make a decision as to what will be best for you. Do take care.

    Nina

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