Sick of Cancer Studies?

So the other day, I was telling my mom about an idea I had for short story. “A scientist has discovered a way to live forever, by giving himself cancer.” This is, admittedly, a ridiculous idea, and just the sort to stretch the imagination. Perfect for a short story of the kind you’d see in Astounding or on the old Twilight Zone series, right? But my mom, being the down to Earth kind of person she is, threw me right out of my story and back to real life. “Oh, cancer. I’m sick of hearing about it. There’s a new study every day. One day something causes cancer, the next it cures it. Those scientists can’t make up their mind.”

If this had been a television show, you’d hear the needle-scratching-across-the-album sound right there. So then I got to spend the rest of our telephone conversation trying lamely to explain to someone who really had no interest in hearing it, that she was… well… not wrong, precisely, but certainly not right, either.

Ok, can’t argue with the being sick of hearing about it part. I’m pretty sick of it too. You have to understand, mom is a cancer survivor. She doesn’t think of it that way. She never really thought she was in any danger. She had this sore on her nose, and it kept coming back, and got worse and worse, until at last a doctor insisted on some tests. So she got it removed. That’s how she thinks of it, like a wart or an extra nipple, just nip it off. She didn’t require chemo. She never felt the need to juice, or cleanse, or travel to Mexico for special treatments with a zapper. So this is the woman I have to explain this stuff to. And she just is sick of hearing about it. Mom won’t believe me no matter what statistics I quote. But maybe I can help her get there on her own.

Wikipedia says this is squamous cell carcinoma.

Wikipedia says this is squamous cell carcinoma.

Mexico zapper
Mexico zapper

“Cancer, isn’t a disease.”

Understanding why there seems to be so much conflicting information about Cancer starts with understanding how we’ve made some basic assumptions that may not be quite “on the nose”, if you’ll excuse the pun. Mom’s not a fool. She knows what a disease is. It’s a thing you get a vaccine for, or you get spots, a fever, vomit, maybe bleed from your eyeballs, cough, and die. Her own mother died of Tuberculosis. She knows what a disease is.

Pustular eruption of smallpox on face

Pustular eruption of smallpox on face

Cancer, well, what is cancer, exactly? I might as well start that book research right now. I’d start with any old dictionary, but since they make special medical dictionaries, I decided to save time.

Medical Definition of disease
  1. :  an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors

"Disease." Merriam-Webster.com. Merriam-Webster, n.d. Web. 15 May 2016.

So, to be a disease, the condition has to cause an impairment, and be caused by something other than an accident alone. Falling off your sister’s skateboard and breaking your arm, is not a disease. But anything from Depression to eczema to syphilis, is a disease. Ok, by that definition, cancer is a disease.

But, is it a disease? I had heard there were more than a hundred, and maybe as many as thousands of different types. I’m not going to mention them all here, but the National Cancer Institute lists some you’ve probably never heard of, like:

  • Bile Duct Cancer, Extrahepatic
  • Chronic Myeloproliferative Neoplasms
  • Craniopharyngioma
  • Esthesioneuroblastoma
  • Gestational Trophoblastic Disease
  • Macroglobulinemia, Waldenström
  • Paraganglioma
  • Wilms Tumor

“Yeah,’ says the guy on Facebook, ‘but these are all just different names for the same disease. It’s just the location where it manifests that makes them different.” And ok, there’s something to that. Cancer is a catch all term for what happens when cells in your body start multiplying out of control. And if that is all you mean by cancer, you could claim it was a single disease.

It’s harder to really get a handle on cancer because it isn’t a foreign infection. Cancer isn’t an organism like a bacteria or a virus. They are your own cells, made by your own body. These cells start out as seemingly normal cells. Cells from different parts of the body, look different. Muscle cells don’t look like blood cells, which don’t look like skin cells, which don’t look like bone cells, brain cells, or sex cells. When a doctor or lab technician looks at a cancer cell under a microscope, it can be said they aren’t looking at cancer, they are looking at cells that have cancer. So, do those cells look different from other body cells? Yes, they do. But they also look different from each other.

For example, cancers that look like glandular tissues are called adenocarcinomas. Other cancers that resemble certain immune system cells are called lymphomas, and those that look like bone or fat tissue are osteosarcomas and liposarcomas, respectively. – American Cancer Society

smoker
smoker

Remember also the second half of that definition, the part that says and it has to be caused by something other than an accident alone. Cancer isn’t caused by one thing, it’s caused by lots of things. Smoking is a major contributor to lung cancer. And according to the National Cancer Institute, smoking has been associated with cancers of the esophagus, larynx, mouth, throat, kidney, bladder, liver, pancreas, stomach, cervix, colon, and rectum, as well as acute myeloid leukemia. But it hasn’t been shown to cause cancer of the brain, testes, or breast. Some meat may contribute to colon and liver cancer, but hasn’t been demonstrated to affect bile duct cancers.

“Remember when you had skin cancer, mom? That’s caused by years of direct sun exposure, something not likely to result in other forms of cancer.”

And then we have the genes. There is no such thing as a cancer gene. Instead, there are lots of different genes, acting in concert to either predispose us to cancer, or protect us from it. Different cancers seem to be affected by different genes. My son was born with something called chondrosarcoma. A cancerous tumor of the cartilage. This sort of tumor in children represents only about .8 percent of all soft cell cancers, which themselves are a subset of all cancer. The National Cancer Institute has a really interesting graph showing all the chromosomes and their genes which are associated with soft cell cancers. Some actually cause a particular type of mutation, others suppress our ability to fight cancer, and still others simply fail to stop a process. Even between Mesenchymal chondrosarcomas, and extraskeletal myxoic chondrosarcoma, different causal sequences have been identified. How could one disease have different causes?

Extraskeletal myxoid chondrosarcoma t(9;22)(q22;q12), t(9;17)(q22;q11), t(9;15)(q22;q21), t(3;9)(q11;q22) EWSR1/NR4A3, TAF2N/NR4A3,TCF12/NR4A3, TGF/NR4A3

Mesenchymal chondrosarcoma Del(8)(q13.3q21.1) HEY1/NCOA2

- National Cancer Institute

It can’t. Cancer isn’t one disease, it’s hundreds, maybe thousands of diseases. Cancer is a category of diseases. Think of it in terms of The Walking Dead. (You knew I’d work a pop culture reference in here somewhere, right?) Let’s say someone says to you, “I don’t like science fiction shows. There’s a new one every week and they all say different things.” Would you agree? You’d probably say that’s because science fiction is a huge category that includes everything from space opera to spoofs to superheroes to science fantasy. Doctor Who and the Walking Dead both fit into this category. So does Twilight, Harry Potter, Star Trek, Heroes, and the X-files. That’s a pretty large category. If we subdivided and then subdivided again, we might have a cladogram like this:

Walking Dead cladogram
Walking Dead cladogram

Cancer then, isn’t The Walking Dead, it’s more like the category of Horror. So our cladogram might look more like this:

cancer cladogram
cancer cladogram

“So,’ I asked, ‘Can we agree that cancer is not one disease, but many?”

Mom said, “Yeah, but that’s not what the studies say. They always say, soursop is a cure for cancer, or marijuana helps with cancer symptoms.”

“You don’t read studies, you read articles.”

This made my mom look at me as if I was insulting her intelligence. Like mom, I’ve fallen into the trap of assuming that the popular news article on research was close enough. After all, all those posts and articles and new stories start with “A recent study shows…” So they must be reading from the study, right? At the very least, they must have read it, and are now paraphrasing, right? Nope.

Here’s what happens in most cases. A research study is done by some university, company, or nonprofit organization. The write up will be presented as a paper at a conference or published in a journal. Write ups in journals tend to be dry, boring, technical, difficult to understand and in no way sexy. So the university or company or NGO’s press people will write up a press release. You can find these in their original form by just Googling “press release” and adding any study. Try it.

canadaC_thumb.gif

I Googled “press release sex study” because I figured at least that study might be actually sexy. I got this press release about a study of the sexual interests of Quebec citizens, who are apparently called Quebeckers. This was the first thing that popped up, by the way. So those Quebeckers’ sex lives is a subject interesting enough, to enough people, that they are supercharging Google’s search engine. Just saying. Now, just for fun I decided to play a little game. You can do this too, with whatever press release you find. I found what seemed the best sentence to sum up the study, in mine it was the one below. Then, I highlighted it, right clicked, and selected, “search Google for… ".

… findings recently published in The Journal of Sex Research contradict the DSM-5, as they demonstrate that a number of legal sexual interests and behaviors considered anomalous in psychiatry are actually common in the general population.

- University of Montreal on EurekAlert.com

 

And the very first article that popped up was this one by ScienceNewsline. Quebeckers' Sexual Tastes And Interests: a New Study Debunks Preconceived Notions

… findings recently published in The Journal of Sex Research contradict the DSM-5, as they demonstrate that a number of legal sexual interests and behaviors considered anomalous in psychiatry are actually common in the general population.

- ScienceNewsline

Notice that this is not just similar to the press release, it is exactly the paragraph from the press release. And if you read the whole article, you won’t notice a dime’s worth of difference between the original press release, and the “article” posted. This would be ok, if it was identified as a university press release, but it is sort of confusingly presented. One might assume it was a press release if one read only the top where it says, “Released by University of Montreal” but at the bottom of the page we read, “The above story is based on materials provided by University of Montreal.” Based on? My old English teacher would have given me a D for plagiarizing if that much of my “story” was based on someone else’s work. (It isn’t strictly speaking plagiarism, because that’s what the people who release press releases want you to do.) So, most people, including most science reporters, never read the journal article or study paper, they read a press release, and most don’t even bother trying to understand even that. They just rearrange a handful of words and repost it.

But the press release was written by the institution itself, and therefore ought to be pretty accurate, right? Um, not necessarily. From the hundreds I’ve now read researching this and other stories, I’ve discovered that very few press releases accurately relay both the findings and the methodology of the study. The most frequent problem is puffery. You know, that thing that companies use to sell you dish soap, coconut oil, and cough medicine. Puffery is a kind of lying we’re mostly ok with. Coca-cola does not bring sunshine wherever it goes. Buying her chocolates or flowers will not make her fall madly in love with you. You will not have baby soft skin because you use Ivory soap. Birds won’t run into your windows on purpose if you use Windex. It’s ok, we know Mother Nature herself won’t get mad about your margarine choice. But when universities, NGO’s, and companies puff up their press releases about their latest studies, it can have some less acceptable results. For one, my mom gets sick of it, and stops believing anything science has to say. And that’s not cool. We have a hard enough time getting her to go to the doctor, take her insulin, and stay on her diet.

The original study might say something like,

Mean alcohol consumption was 2.95 ± 4.5 g/day; 1588 HF cases occurred during follow-up. The quantity of alcohol consumption was inversely associated with incident HF in this low-drinking population. The risk was lowest for consumption over three but less than six drinks/week …Among problem drinkers based on CAGE questionnaires, total consumption showed no favorable association with HF, even when overall consumption was otherwise moderateConclusions

Frequent light-to-moderate alcohol consumption without problem drinking was associated with a lower HF risk in this population characterized by a low average alcohol intake.

While the press release will say,

"It's primarily the alcohol that leads to more good cholesterol, among other things. But alcohol can also cause higher blood pressure. So it's best to drink moderate amounts relatively often," he says.

Decreased risk with each additional serving (emphasis in original)

And the more responsible online article will say,

People who drink wine, liquor or beer regularly are less prone to heart failure and heart attacks than those who rarely or never drink. Three to five drinks a week can be good for your heart.

Drinking a little alcohol every day may be part of a healthy lifestyle … He says alcohol does more good than harm for your heart when consumed in moderation.

And by the time it gets to the Daily Mail, they are writing,

Cheers! Alcohol IS good for you: Up to 5 drinks each week 'lowers risk of heart failure and heart attack'

Miller High Life sign on building in Fairbank Ghost Town, Arizona

Miller High Life sign on building in Fairbank Ghost Town, Arizona

Each succeeding article only slightly changes the intent and message of the original. Ignoring the cancer and cholesterol issues with alcohol, not emphasizing the need to limit intake, not mentioning that only healthy people without drinking problems benefitted, and failing to mention there was no benefit found for nondrinkers who start drinking, all lead to a complete misread of this article. And this is for a subject most researchers are in agreement about. Moderate alcohol intake can be good for your heart, though it has other health repercussions that may make it a bad way to reduce your heart attack risk. Diet and exercise are still, far and away, the best way to prevent heart disease.

“There aren’t enough research studies.”

So we’ve seen there are hundreds to thousands of cancers to be studied. But there are actually not studies coming out weekly. It may seem like there are, what with all the repetition in all the online, print, and air media out there. And there is no way I know of to get an accurate count of the number of actual studies done, since not all are funded through public funds. But NCI (The National Cancer Institute) does publish its budget annually. For 2013 it was $4.79 billion. Sounds like a lot, but remember 100s to 1000s of cancer types. If they divided these dollars evenly between all cancers, they would be spending somewhere between $40 million and $4 million per cancer type. $40 million may sound like a lot, but it barely covers one experimental drug treatment study. And the money isn’t shared equally across all cancer types. Breast cancer, prostate cancer, and leukemia get the lion’s share as explained in this study. This is partly due to their better publicity and wealthy benefactors. But it’s also due to mismatches in government priorities and research demands.

Panama in NICU 1991

Panama in NICU 1991

Remember my son’s chondrosarcoma? Yeah, research dollars are really tight for cancers that are so rare, and all pediatric cancers tend to get less dollars than adult cancers. Rare cancers like my son’s tend to rely on information gleaned from adult cancer studies. And not just due to money being scarce. There aren’t enough pediatric chondrosarcoma patients (and that’s probably the only time you’ll hear that) to do proper studies. So, in reality there are not enough cancer studies.

I finished up this long explanation and waited for mom’s reaction. After a minute I asked loudly, “What do you think, mom?” But all I heard was snoring. Do you think I convinced her?