Tag Archives: immunotherapy

#Worldcancerday fosters bonkers advice

#worldcancerdayToday is #worldcancerday and forgive me if I’m a bit cynical. But looking through Google’s news feed on the subject,  I can’t help but wonder if today is the day journalists dug into their pile of press releases to see which ones mentioned cancer, then just regurgitated the information without doing any real research or asking meaningful questions.
Don’t get me wrong. There’s a lot of really great news out there about cancer and the potential for a cure.
But there’s also a lot of craziness that needs debunking. I get why spreading the misinformation is so popular. No one wants to think that there’s nothing they can do to protect themselves from this insidious disease. The truth is though, you really can’t: 85% of all cancers are caused by pure genetic bad luck; 5% are also the result of bad genetics that are known, such as women with the BRCA gene who have a family history of breast cancer like Angelina Jolie, who famously had her boobs cut off rather than risk a chance incurring of the disease. The remaining 10% of cancer cases can be prevented, namely by not smoking. To date, the only known cancer-causing substance is nicotine.
Nonetheless, today’s headlines are filled with inaccurate cautions and prevention strategies. This story claims that if you just stay away from certain foods or certain food packaging, you’re out of the woods. I don’t dispute that carcinogens may be found in the products mentioned. I’m just saying that there’s no scientific research that proves they cause cancer. We’re exposed to carcinogens everyday.  And theoretically, enough exposure over time could lead to cancer. It’s just that at the moment we don’t know how much exposure or how much time, which makes it hard to prevent.

Then there’s this CNN story that somehow determines that a correlation between obesity and cancer somehow makes obesity a cause of cancer, particularly among millenials. Let me explain something about correlations and how they’re derived. You take one number, such as how many people are obese and plug it into a fancy formula with another number, such as how many people have cancer. If it produces a high percentage – say 80% – then mathematicians say there’s a correlation. So let’s say you take the number of pizzas sold at your local pizza place on Superbowl Sunday and match it with the number of kitten videos posted on #Caturday on Twitter and plug it into the same formula to find an 80% correlation. As a rational human being, do you really see a correlation? And can you extrapolate from it that pizza orders on Superbowl Sunday cause out-of-control cat video postings on Twitter on a given Saturday?

MD Anderson’s Dr. George Chang, who’s quoted in the CNN story, says it best: “The study was not set up to establish causation. We know there are many factors that are associated with both obesity and cancer, such as lack of exercise and poor diet. How much each of those factors contribute to cancer is less clear.” Somehow that information is buried deep within the story.

Then there’s this well-meaning piece that confuses early detection with preventable deaths when what they’re really trying to prevent is costly treatment.

“By detecting cancer at its earliest stage, we seize the greatest opportunity to prevent millions of avoidable deaths worldwide,” the Union of International Cancer Control’s chief executive officer Dr Cary Adams said. But read a little further and really what he’s suggesting is that detecting cancer can buy five year’s worth of life, which really isn’t a cure and certainly doesn’t prevent millions of deaths. Perhaps prevents millions of premature deaths would be more accurate.

The real news on World Cancer Day is what’s being done to cure cancer or at least make it a manageable disease. Unfortunately that information hasn’t percolated through Google’s news feed, although it did make my inbox. Take for example this update from the Cancer Research Institute on what’s on the horizon for immunotherapy. As CRI’s review notes, if diet has any impact on cancer at all, research shows it’s through a healthy gut microbiome. That means eating more yogurt, high-fiber foods and fermented foods or drinks such as kimchi or kombucha. Somehow that point has been missed by all the “prevention” and “eat this not that” enthusiasts.

 

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Uncertainty Casts Grotesque Shadows

uncertainty-casts-grotesque-shadowsCancer has declared a stand-off. Not moving forward, not moving backward.
In some ways, this is the worst possible news. Had my numbers gone up, I’d be making appointments for scans, plotting my next move to enter a clinical trial.
Had my numbers gone down, I’d relax and coast. Get back to writing my novel and creating a new normal, instead of haunting medical research sites and online drug dictionaries.
Instead, my numbers stayed the same, holding me hostage in uncertainty. Rubbing my nose in my vulnerability.

When you’re feeling vulnerable, there are two roads you can take: Victimized Avenue or Pioneer Boulevard. Early on, I chose the Boulevard. But I have to admit, sometimes the Avenue appears like a shortcut, and I can’t help turning down it.

Yesterday I presented my clinical trials chart to my oncologist. He seemed impressed with the work I’d put into it. His practice is in the process of aligning with MD Anderson and will soon be offering that cancer research institution’s clinical trials. Four of my top five choices are MD Anderson trials.

My chart is in an Excel spreadsheet which can be hard to read on paper. So while I handed a copy to him, I also told him I’d email him a version. It would be easier to read and more importantly, easier to locate for a phone call he said he had with MD Anderson folks the next day. I grabbed a business card from his desk while he nodded earnestly.

When I got home, I went to email him the info, but his card didn’t have his email address. So I called his office. The receptionist told me she’s not allowed to give doctors’ email addresses out.  Her name is Anita. I’ve renamed her We Need A – as in we need a lot more like her. She mentioned that I could go online and find it.  I thanked her for the suggestion.

His email address isn’t online, but it wouldn’t take a third grader more than a blink to decode it based on the email addresses I could find. Within a few moments, I’d emailed him the chart.

But then I started to wander down the Avenue. Why hadn’t he told me about the email Cone of Silence? Why hadn’t he just been honest and either given it to me or offered me another solution? Was he just blowing smoke about the whole thing? Did he even have a phone call about clinical trials set up?!? Or the moment I left, did he just throw my chart in the trash and move on to the next patient? Most of all, mired in my vulnerability, I began to wonder, can I trust my quarterback to have my back?

Uncertainty casts grotesque shadows and the Avenue looks like a straight, well-paved road, before it veers off into ruts and potholes.  This part of the journey seems unbearable. My mind monkeys have taken the steering wheel while I dive in the back seat to subdue my nausea that’s intensified by the taste and stench of chemicals exuding from me, the result of drugs I’ve just been infused with. Drugs that may or may not be working and demand a lot from me in the meantime. Mind monkeys are poor drivers. It’s a wonder I ever give them the wheel. In my weakness, though, the offer of letting someone else drive is too tempting. I can’t resist. I hold my stomach as they careen over every bump and hole along the Avenue – and this far in, there are plenty. I pray we get back on the Boulevard soon, even though, at the moment, I’m not feeling much the pioneer.

This morning, I got an email reply from my doctor. A short thank you sent from his cell phone letting me know he’d received my info. It’s enough to make me park the car and wait until I’m feeling better to take back the steering wheel as we both head out onto the Boulevard.

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