A Story About Cancer

May 2022

 

 

“More than 10 million Americans are living with cancer, and they demonstrate the ever-increasing possibility of living beyond cancer.”

Sheryl Crow

 

“And that sadness is intrinsically part of the fabric of happiness. You can’t have one without the other. Of course, they come in different degrees and quantities. But there is no life where you can be in a state of sheer happiness for ever. And imagining there is just breeds more unhappiness in the life you’re in.”

― Matt Haig, The Midnight Library

 

I have a strange memory from a number of years ago, on New Year in 2018 in Singapore. My wife and all her cousins are at the top of a hill by the road on a strip of restaurants. All the cousins are waiting for taxis to come and I’m standing alone with one of her younger male cousins and his wife. They’re both about 30, recently married the year previously in 2017.

The cousin pulls out a cigarette and lights it but then his wife turns to him, grabs it and snubs it out. She tells him, “I don’t like it when you smoke.” He then sheepishly pulls out another one, smiles to her and says; “I had a good night, don’t worry so much, I’m young, nothing is going to happen.” She smiles and relents and he smokes a couple of cigarettes while we talk about the dinner party we just left and what we have planned for the new year.

This moment then leaves my consciousness and comes back years later today. About 2 years after that moment, in 2020, he gets diagnosed with stage 4 colon cancer which is a huge shock because he’s 30, slim, fit and there’s no family history of it. He gets treatment and for a year it looks like he’s winning until the second year comes around and he very much starts to lose the battle. The bulk of the weight of the whole ordeal falling on his wife. The fight is one of the most heartbreaking and tragic things I’ve ever seen.

There’s probably not a lot of causation in that one exact moment and indeed there’s a ton of randomness involved when it comes to cancer generally. But the memory is important because there’s a moment in it when his wife asks him to do something because she’s concerned about his welfare. She loves him and they knows it’s unhealthy but he does it anyway. He writes her off as a nagging wife and continues. But also because there’s a bias that you have when you read that.

This story sticks with me because what happened with him is so tragic and also because your mind does a somersault of causation when you hear it. You think X must have lead to Y. But the truth is, much of a disease like cancer is entirely random and there was probably little he could have done to avoid developing it anyway.

It’s estimated that 2/3rds of cancer mutations are random such as due to genetics or exposure while the other 1/3rd is due to lifestyle factors like obesity and smoking. So most of health advice is optimising for that final 3rd of risk probability which is what you can control. You can’t control for the 2/3rd that are random.

But the story also sticks with me because there’s a ghost in the story. Something that isn’t quite right but you can’t put your finger on until you think about it. The answer is the tumour. When the cousin is smoking here on that night and we’re talking and his wife is telling him she doesn’t like it, the tumour is already there in the story, he just doesn’t know it yet. The polyp that will grow into that cancer already exists. It has likely been there for years already.

Because the thing about colon cancer is that it takes 5 to 10 years for a polyp, which is a growth in the colon, to turn from a harmless growth into a cancer. And 95% of colon cancers happen because of a polyp becoming malignant. Polyps can grow because of a lot of different reasons, they can grow entirely randomly or because of genetic or lifestyle factors. There is the ghost, the polyp that then grows into a tumour, in the background of the last few years of his life before he even gets a diagnosis. It was probably even there at his wedding.

The thing about this particular type of cancer is that it’s rate of occurrence is actually growing in young people while decreasing in old people. Young people as a cohort are usually a group that the rate of developing cancer decreases but this one bucks the trend. And it’s growing by a lot, some estimate by as much as 90% to 125% per year. But what’s most troubling is these cases in young people when they’re diagnosed are usually further developed. Meaning they’re already stage 3 or stage 4 when they get diagnosed.

The reasons is because when a young person goes to the doctor with symptoms, the doctor thinks they have IBS or hemorrhoids not cancer. And older people are already screening for cancer whereas doctors don’t actively recommend young people to get cancer screened. Because it’s a low probability they have it even though their cohort is growing by 100% per year and when they are diagnosed they often have a worse outcome than the same person when diagnosed older in life.

People also think they have more control over it than they actually do. So they think if I eat right and exercise and are healthy, I’ll be fine. So they don’t get checked and do tests and aren’t proactive about testing. But frequently the young healthy person who eats right and exercises will also will get cancer.

This is what happened to the cousin. When he finally went to see a doctor, he spent 12 months getting misdiagnosed and handballed from doctor to doctor with everything from irritable bowel syndrome (IBS) to ulcerative collitis to Crohn’s to hemorrhoids. It took forever for a doctor to finally order a colonoscopy to 100% confirm what was happening and by then it was already too late to prevent. It was stage 4 cancer which had spread everywhere.

But here’s the thing, that procedure called a colonoscopy, which is very safe can actually find and remove precancerous polyps if you do it early enough. During the procedure they actively remove every polyp in the colon before it can become cancerous. It should be done early and often, sometimes before there are any symptoms. People are recommended to do their first colonoscopy at 45 and then every 5 years after that. But that recommendation wouldn’t have helped him since he was 30.

From the Moffitt cancer centre: “Most experts agree that adults who have an average risk of developing colon cancer should have a baseline colonoscopy at age 50 and, if the results come back normal, a follow-up colonoscopy every 10 years thereafter.”

But one of the problems is most people who should be doing them, don’t. Here is something that blows my mind. According to one of America’s foremost gastroenterologists, if every person got a colonoscopy every 5-10 years then colon cancer rates would reduce by 95% +. It’s an entirely preventable disease if people just did a colonoscopy more often. If doctors were faster to request them and people knew to self advocate and ask for them. The disease almost wouldn’t exist anymore.

Why don’t people do them? Because they think it’s weird and shameful so they don’t ask and doctors avoid recommending. A colonoscopy is basically where a doctor shoves a tube with a camera up your butt to see what’s happening. Because of that shame and awkwardness, people die from a completely avoidable disease each year.

A lot of people. It’s the 2nd most common cancer in the world. Which means so many lives would be saved if more people just knew this. That they could do something a bit awkward every 10 years and it might save their life. That would equate to millions of lives being saved per year and millions of cancers found earlier when they respond better to treatment.

The other reason people don’t do them is because they don’t know about it. I had never even heard of the procedure until now. How something small can have such a big impact yet I’d never heard of it before was beyond me. In fact I think there’s a lot of things in medicine that are like this where there’s some small safe procedure that could be really helpful and save lives but regular people just don’t know to ask for them or that they exist or when to self advocate for it. I know this from personal experience.

After I heard about the diagnosis I went to a doctor and asked to do a colonoscopy. I was expecting him to tell me all about it and book in a time but instead he tried to talk me out of it because I was young. Even though young people are the fastest growing cohort of people that are getting these types of cancers. I had to self advocate to get a referral to get one done. But for most people they trust whatever the doctor says and don’t know to do that. That seems to be the common experience of people I’ve spoken to.

I then went home and talked to my parents about it. My mum then tells me that she had done a colonoscopy years ago and had polyps removed. But she felt uncomfortable talking about it and so never told us. That information never traveled because even the people who’ve done it and benefited feel a stigma around talking about. This is totally and completely wrong. It should be talked about all the time.

Even though we know it’s a highly effective preventative intervention that works to reduce deaths, but because it is speculative where you may not find anything, most of the time the doctor is actually the one trying to talk them out of “unnecessary” procedures. But the thing is, often by the time it becomes a “necessary” procedure with symptoms, it’s already too late for it to be preventative because there’s a real disease now. But many general practitioners or doctors don’t actively screen for cancer in young people or actively discourage young people from cancer screening.

Even though, the literal quote from some of the worlds foremost cancer researchers is this: “More importantly, it means everyone needs to be screened for cancer when possible even if they think they’re at low risk because of family history and their own healthy habits, Vogelstein said, because their findings mean everyone’s at risk of cancer, the No. 2 killer in the United States.” Many specialists recommend early and lifelong screening. So clearly there’s a disconnection between what is happening in the research and what is filtering it’s way into consulting rooms and families all around the world.

That story memory also hits close to home for me because my Dad is the same way. I’ve seen my Mum turn to him and tell him basically the same thing, to stop smoking, for the same reasons. But he continues to smoke anyway, writing off his nagging wife and every person who’s asked him to stop his whole life. Nothing bad has ever happened to him and I’m really hoping nothing ever will. But he has no idea the kind of emotional weight it puts on the people who love him by continuing to do so. Like I am actually scared that something bad will happen someday.

Health is basically just a probability game. You’re playing a game where you try to make yourself a smaller target for whatever disease is out there that could affect you. You’re trying to reduce the odds that you get exposed to something or that your body breaks down. So why someone would make themselves a bigger target makes no sense to me.

To everyone that reads this, get a colonoscopy and stop smoking. They’re 2 of the easiest ways of making yourself a smaller target and preventing something potentially really bad from happening.

Attachments:

This is a book written by him and his journey through it. It’s his wish that as many people read it as possible so I’m posting it here. You can read and download it by clicking this link.

Why is the youth 20 – 40 year old cohort the fastest growing group of colon cancers? Medicine doesn’t really know why. From this article:

“Colorectal cancer is now the third leading cause of cancer death in young adults. In fact, about 20 percent of people diagnosed with colorectal cancer are between ages 20 and 54, according to the Colon Cancer Coalition. Compared with people born in 1950, people born after 1990 are twice as likely to develop colon cancer and four times as likely to develop rectal cancer, the coalition reports.”

I did a deep dive into why and the answer trends for why this is happening to young people in particular, while it didn’t happen to previous generations at the same age, fall into a few categories:

  1. Increased antibiotic use in children. This regularly destroys the gut microbiome which has been found to be protective.
  2. Increased processed meat consumption. Processed meats are high in nitrates which are carcinogens. As nations became wealthier, fast food and processed food consumption has grown exponentially.
  3. Accutane, a powerful anti acne drug was used by 25 million people. It’s been found to cause colon disorders such as IBD, IBS and cancer. The maker Roche Pharmaceuticals regularly pays out settlements to class action law suits. Despite being designed to be used sparingly, dermatologists and doctors over prescribe this drug.
  4. Too much Protein in diets. Diets very high in protein overstimulate IGF-1 which helps grow muscles but also may lead to rapid tumor development. This may be happening in tandem with the growth of the fitness, body building and protein supplement industry. But also as people become wealthier they eat more meat.
  5. Too much Folic Acid in diets. Cereal makers and grain manufacturers started reinforcing breads, grains and cereal products in the 80s and 90s with Folic Acid and Folate. It was shown to be very positive in protecting against cancer but it turns out too much may actually cause cancer. It was supposed to be a public health initiative like Fluoride in toothpaste.