Everything That Makes Us Human

by Jay Jayamohan

  Tumours appear for different reasons. First guess historically has always been genetics. Our tests found no obvious cause in either parent’s lineage. These days there is a whole area called epigenetics, which studies the way that the environment changes your genes, even in utero. It’s interesting stuff, but not particularly helpful when you’re staring at a tumour that’s only going to keep growing.

  Despite their bad press, it can be malignant brain tumours that pose a lesser threat than their ‘benign’ cousins. Or, at least, a more treatable one. Due to their cells’ rapid replication, they often prove susceptible to chemotherapy and can be treated without invasive surgery, just a biopsy. I know I’m a surgeon, but I’m never happier than if I don’t have to operate at all on a newborn. There’s always someone else who does need an operation.

  Tumours in the brain differ from elsewhere in the body. Or, more accurately, our responses to them do. At face value, people think that having a malignant tumour must be terrible because it can spread around and it’s the benign tumour you pray for. In neurosurgery that distinction is anything but obvious. Sometimes more important than the type of cells that form the tumour is its location. A benign tumour in a very important structure of the brain can do the most damage.

  For example, right in the centre, in the midbrain, the ‘clockwork’ of the brain which controls stuff like wakefulness, blood-pressure and breathing, a benign tumour can cause immense difficulties. Partly as it grows and squeezes important nerve endings, but also when we come to try to remove it. Accessing and then cutting at something in such a delicate area is like walking a tightrope. The odds of injuring an important structure can be greater than the chances of removal.

  The majority of tumours present by affecting the brain around them and causing a problem with the function. So we may see children who have developed a weakness in the limbs or poor core balance, or difficulties with eating or with vomiting after they eat. Problems with their speech, their vision. Anything that you can think of that the brain controls can go wrong if there’s enough pressure on the cells in charge. Seizures are common. Even something like epilepsy can be a result of a growth muscling in on the brain.

  It gets worse.

  While tumours that grow from outside can constrict the brain and do serious damage, they do tend to be more easily removable. Sometimes, when you’ve removed such a tumour, the brain will expand back to fill the space.

  With those tumours the biggest question is the quality of the boundary between the tumour and the brain. If it’s a very good one, as in ‘this bit is brain, this bit is tumour’ and they’re just lying next to each other rather than entwined or incorporated within each other, then you can hope to achieve a fairly clean break. Other than the brain vessels coming in to feed the tumour, you can work carefully around the whole lump, cutting it up piece by piece.

  In brains, and in children especially, those neat little packages are rare. The worst types are what we call ‘intrinsic’ – that is to say, they’re within the brain itself. Not next to it or around it, but part of it. The issue then is how much brain tissue is within the tumour as opposed to how much tumour tissue is within the brain? On the edges of the tumour, how much is the interface between tumour and brain? How well delineated is it? How large is it? Can you make out brain from tumour with the naked eye?

  There’s one type of tumour known as DIPG – Diffuse Intrinsic Pontine Glioma – which grows within the middle or ‘clockwork’ part of the brain. It’s insidious, completely embedded. Good cells grow networked with bad cells. They’re impossible to separate. In those cases you just have to hope chemotherapy and radiation will treat the worst of it.

  Imagine two hands together with interlocking, overlapping fingers. Where does one finger end and the other begin? Which one is a brain cell and which one is a tumour cell? All you see is tumour interwoven with brain. It gives you, as a surgeon, a decision to make. ‘Do I cut off from the left knuckle? In which case I’m leaving those fingers of tumour behind. Or do I cut off at the right knuckle? In which case I’m taking all the tumour, but all those bits of brain as well.’

  What we can’t do is operate down to the cellular level. We can’t go in and take individual cells out and leave alone those other cells in between. Chemotherapy can go some way towards a similar result, but the scalpel capable of the type of incisions necessary has yet to be invented. And neither, I suspect, has the surgeon.

  The question is: what should this child’s treatment comprise? While the decision will ultimately be mine and the family’s, I like to take advice from my learned colleagues. Every week I sit down with the oncology, pathology and radiology departments and we work through the results for our upcoming and ongoing patients. With the right people it’s a healthy and productive way to work. And, luckily, we have the right people.

  I might have four or five ‘hot’ cases in the pipeline, each at various stages of treatment, and the oncologist will have a similar number. We present each case and use each other as sounding boards. At best we’re trying to find the best possible treatment for each individual patient. At the very least we want to avoid the scenario where you’ve attempted a risky operation only for the radiologist to say, ‘Why the hell did you operate? It was obviously a very chemo-sensitive tumour.’

  Some situations are black and white. After a sample biopsy or a bigger removal, the pathologists will present the slides of what they’ve seen and say as categorically as they can, ‘This is tumour X.’ Then the oncologist will say, ‘Okay, we now need to proceed with this type of treatment’ or ‘Let’s do another scan because it looks like it’s a GRT.’ This means a Gross Total Resection – it’s always so good to hear that we have removed the tumour completely. There’s little to argue with following such assertions.

  It’s the cases where a biopsy has yet to be performed where opinions come more into play. Based on scans, the radiologists will give us the top two or three likelihoods. If their feeling is that a tumour is chemo-sensitive (one that will likely respond well to chemotherapy – drugs that we can give by mouth or injection) I take that on board, especially if the tumour is in a dangerous location. But if I can see that it’s in a really easy-to-get-to-place with minimal risk to the patient, then sometimes I will advocate doing the operation. Why subject anyone to months of ravaging chemo when a ‘short, sharp shock’ style of treatment can get them on the mend in days?

  It’s all about consensus. About minimizing risk for the patient and providing the best care. Sometimes getting there can feel like a battle, but usually it arrives fairly organically. As it does with my latest case.

  Scans show that the entire left side of Baby’s brain is taken up by tumour. Malignant or not, I put her likely lifespan, if untreated, at no more than a fortnight. The oncologist agrees. As does the radiologist. And the pathologist.

  The fact that the patient is so tiny, so frail – born a month premature – means she might not survive multiple invasions. Even if we had the time. But then again, she has about as much blood as in a small glass of wine in her whole body. We need to have a clear plan when to stop – and this is likely to be decided by blood loss. Again, it’s a balance.

  But it’s decided. We’re going in. And we’re going do as much as we can in one hit.

  Of course, the parents ask me about the chances of success. They always do. I make it a personal point never to paint a rosier picture than we have. I don’t pull punches. In this case I am not able to say that the success rate for this type of operation is high.

  Later that night, I ask myself, ‘Why do it?’ We’re looking at a patient who should, by rights, still be in the womb. What’s the point of subjecting her to the nightmare of surgery if it’s too risky? Surely she should have some chance at life. Her family should have some time with her, even if it’s only days or weeks. Without a decent track record, it could be said that there would be no justification for putting babies or their families through that kind of agony.

  Let’s
say I’m quietly confident we can help. But trust Dad to ask the one question I never answer. ‘Can you cure her?’ he says.

  I shake my head. I won’t ever use the word ‘cure’. There are too many variables. So I say what I always say in these circumstances: ‘We can certainly aim to treat her.’

  The anaesthetist is ready. His heart-monitoring equipment has been bleeping monotonously for the last ten minutes. Two large screens stand between him and my scrub nurse. On one we have the scans displayed for reference. On the other is a live view from an ultrasound machine. Between my knowledge of anatomy and the image the camera will give, I’ll have a kind of sat-nav to guide me through the brain.

  First we have to get in. As Iron Maiden’s greatest hits strike up, I shave the section of the baby’s head that I need to access. Then I cut very carefully into the soft skull. At this stage, it’s so soft that we can use a pair of scissors to open it up. Carefully, I lift off the pentagon of bone and see with my own eyes what the scans had already shown. Except it’s not my own eyes.

  You’ve probably seen the ridiculously exaggerated glasses that surgeons wear. If they look like little telescopes over each eye it’s because that’s what they are. They’re called ‘loupes’ and come with immense magnification. Perfect for when a millimetre out of place can mean the difference between a patient walking or not.

  The loupes sit low on the nose so I can see down at my work while being able to peep over the top at my colleagues and the information on the screens. I look up only occasionally, however, just to confirm I’m where the sat-nav thinks I am. Even then I don’t move my head, just my eyes, for fear my hands will follow. It’s enough.

  The baby’s brain is the size of my fist. It looks complete, rippled like a walnut. To a layman it’s probably exactly everything you’d expect from a ‘brain’. Except everyone in the room knows full well that around 50 per cent of what we’re looking at should not be there.

  We know, from our anatomical training, what those ripples should look like and where those ripples should be. Through the loupes I can make out where they become distorted. That doesn’t always mean I’m looking at the tumour, just its impact. In this case it’s both.

  There are many ways to proceed depending on the work ahead. In this instance, I won’t be using a scalpel. Not unless I need to. The patient is too delicate, the risks too high. Not so long ago we wouldn’t have had alternative options. Luckily for us all, we do now.

  The nurse hands me a thin cylinder attached to a cable, the tip about the size of the cartridge inside a Bic pen. It’s an ultrasonic aspirator. It’s actually two cylinders, one inside another. When held against a tumour, the inner cylinder vibrates at such a frequency as to disrupt and eventually dissolve the tissue. At the same time, a thin shaft of water from between the cylinders irrigates the area to form a micro-slush, and then a vacuum sucks up the liquidized result into the inner tube. It is without doubt the safest approach we have, easily the gentlest, and, at something like £40,000 per unit, among the most expensive.

  And, I think, as I look at my 12-inch-long patient, worth every penny for the lives it saves. And the quality of those lives.

  I begin the work. Before my magnified eyes the tumour begins to disintegrate. The first piece is bottled and sent immediately to pathology for analysis. Then it’s back to hoovering up the rest. It’s a satisfying process, like window-cleaning or demisting a car. You can see exactly where you’ve been and where you need to go.

  I move from the outside edge inwards, occasionally flicking my eyes at the screen to check there aren’t any vascular blood vessels or other crucial pathways hidden within the mess. Occasionally, I glance at the heart monitor. No change. Nothing out of the ordinary. Which is good.

  For an hour I move the magic pen across the dubious mass. As I reach the border with the brain itself, I hear the theatre doors open. A registrar stands at my shoulder. The pathology results are in. ‘It looks malignant,’ she says.

  ‘Thanks.’ I keep working. But inside, I think Bollocks. I’m pretty sure I said it out loud as well. But we can’t give up. Not yet.

  I’m virtually done with the majority of the tumour. Now for the tricky part. Even with my super vision I can’t make out where the lump ends and the brain begins. It’s not the best analogy, but if you’ve ever sat with fussy eaters during a steak course, you’ll often see them lopping off huge chunks …

  ‘Why are you doing that?’

  ‘I don’t like fat.’

  ‘That’s not fat.’

  ‘It is.’

  ‘It isn’t. Try it.’

  Et cetera, et cetera …

  With neurosurgery, you can’t just ‘try it’ and then spit it out if you don’t like it. The damage is done by then. Literally. But you can do other things. An ultrasound scanner is very good at picking up the subtle differences in tissue mass, which is key where there’s a danger of blood vessels or major junctions. For example, at the spot where tumour and brain tissue meet.

  The ultrasound sits directly on the brain. The pictures appear on the screen. One look up, one down and I shave off a couple of millimetres. Another look up, another down and a few more go. I can see a corridor of maybe an inch that should be safe for me to dissolve. When I get close to the join, I might need a microscope. Precision is all. I don’t want to jeopardize Baby’s function too much, if it is malignant.

  I shave as close to the border as I dare. Further down the line, when Baby is out of the woods and strong enough, a course of chemo might be able treat anything I don’t take today. The aim of today’s operation is to remove the overwhelming pressure on the brain to the best of our abilities. We’ve done that.

  It’s all about playing the odds. And right now, as I declare our patient ‘treated’, those odds are in our favour. I won’t know for sure how well surgery has gone until Baby wakes up, but I feel good about it. As I stand back to let my registrar begin the clear-up and the replacing of the skull piece, the dulcet tones of Rage Against the Machine scream in my ear. It’s been a good day. Our work here has given this child, with an initial life expectancy of two weeks, an extended shot at life, an increased chance of being the baby daughter her parents dreamed of.

  I’m satisfied we did all we could. More importantly, we didn’t overreach. I didn’t overreach. Aiming for the moon when you’re still on the ground is very tempting, but it can have catastrophic results. As I know from personal experience …

  CHAPTER SEVEN

  EVERYTHING THAT MAKES US HUMAN

  You can’t trust me. At least that’s what I tell my juniors. Same as I say I can’t trust them. There is nothing in our line of work that doesn’t benefit from a second pair of eyes or ears. If a registrar shows me scans, I’ll double-check that they’re the right way round. Then I’ll get the registrar to do it. Maybe I’ll even get my scrub nurse to look as well.

  It’s weird. At home I’m an untidy, slovenly mess. I’d sit around in my underpants and watch The Simpsons all day if I could. But at work I’m an anal freak. Mr Details-Upon-Details. I check, double-check, triple-check, quadruple-check everything. Then I say to whoever’s in the room, ‘You check it.’ Even fundamental things like which side of the head the tumour is on get the Spanish Inquisition.

  ‘Okay, scan says left side. Do you agree?’

  ‘Yes,’ says the scrub nurse.

  ‘You?’ I ask.

  ‘Yes,’ says the anaesthetist.

  It’s not that I think the guys in the MRI department can’t do their job. I’m just not going to take anyone’s word for anything if I can check it myself. In our line of work there’s no going back. Patients don’t have the luxury of us trying again. If I take something out, it stays out. So I give the same pep talk to everyone who works for me.

  ‘Don’t trust me just because I’m your boss. If you think that I’m about to do something wrong, something stupid, you shout. You stop me. I’m relying on you. What’s more, so is the patient. Even teachers make mistakes. We�
��re a team. We succeed as one and we fail as one.’

  It’s a heartfelt speech and a hard-earned one. When you become a consultant, it’s not like you suddenly know everything. You’ve done six, eight or ten years. You’ve reached an arbitrary level of skill. But it doesn’t stop there. The only way you grow is with experience. That means more operations, more patients, more learning – and, if you’re human, more mistakes. Every surgeon, probably every health professional, has a debit and a credit column. The trick is to learn from everything. To try not to make the same mistake twice.

  I’m not sure I’ve ever done anything a colleague would say was ‘crazy wrong’. But I have made decisions that in hindsight could have been better. And one of those decisions I still think about to this day.

  I said I never use the word ‘cure’ as a promise. But when we operate, we do need to try to remove as much of a tumour as we can. This is our job. Sure, if you’re too aggressive you can needlessly cause injury to a patient – which they may endure for the rest of their lives. But if you’re too timid, you will likely ensure that that life is needlessly short. So, knowing our limits is one of the most important things we learn. But it doesn’t come easily. There is a general rule that the older the surgeon gets, the more cautious he or she may become. Perhaps it’s natural as you collect a group of neurologically injured patients, sitting on your shoulders, as you progress through your career. But I was a young consultant at this time. Operating was the thing for which I’d trained for half my life.

  If working on the potential child abuse cases in Toronto and back in Oxford had taught me anything, it was that you can never stop taking on other people’s ideas. I devoured medical journals from all over the world, spent every spare moment scouring the Internet for new breakthroughs or suppositions. When I first became a consultant I read lots of articles about the American health system. Obviously it’s predominantly insurance-based, but that aside their hospitals were reporting staggeringly high ‘success’ rates for brain tumours year on year. Our UK numbers, by comparison, were paltry.