Blame This Post on Mice
Little white mice, the kind used in science experiments.
Someone in an online cancer group posted a link to a study involving little white mice. The poster wondered, with apparent anxiety, when the substance under investigation might become available for us patients.
Understandably, folks in the lung cancer community are all on board the Good Ship Medical Miracle, but every time we try to make sense of a scientific article of how research works, it’s easy to feel like shipwreck survivors on a rickety raft.
What I mean is this. Ms. Mouse Study might not have gotten excited had she:
- known how to interpret a scientific article; or
- if she’d known that mouse studies are among the earliest steps of an investigation into a new drug. The study she posted was not only a mouse study, it was teeny, maybe involving nine mice? That size suggests such a study is more like a pre-study, a testing-of-the-waters to see if a full-blown research project would even be feasible.
This post is about:
- Why you might want to read a scientific paper– or not and,
- How to approach one if you do.
.Should a Lung Cancer Survivor Read Research?
The “ideal” lung cancer patient:
- Is relentlessly positive,
- Has a fabulously healthy diet,
- Tirelessly lobbies representatives for lung cancer research funding,
- Cheerfully keeps up with all the latest research.
Yeah, that’s not me. I can sink into grief or despair or even horror when I read other people’s experiences. These tend to be stories of people who do not live in the U.S. (Do you think nationalized health care would be a wonderful thing? Let’s have a chat….) I get irritated with the world when I’m suppressing worry. I could stand to lose about 25 pounds, but I’m an emotional eater and don’t have it in me to take that on. I write letters when I’m asked and hang a white ribbon during November, Lung Cancer Awareness month, but sometimes even these things feel like a pain. That ideal patient thing? What a load of horse hockey.
Reading research seems like what a “good” patient would do. But before diving in head first, here are some questions to consider.
- What is it you want from the process of seeking out and reading scientific articles about lung cancer?
Some of us, like me, feel knowledge is a way to face down fear. When I’m afraid about the unknown, it’s time to do something. Most recently, I started a spread sheet of the drugs I see mentioned in people’s treatment experiences, and treatments newly approved by the FDA. I also keep a mental file of medical researcher-practitioners survivors contact for second opinions. And, I periodically check the NCCN treatment protocols for lung cancer— they seem to change every 6 months or so.
Note: none of this requires reading scientific papers.
Here are some questions to consider
- Without a medical or scientific research background, what’s realistic for you to accomplish?
- How much time are you willing to commit? (Will you read with a dictionary or Wikipedia open on your screen?)
- Will engaging in this practice bring you joy or satisfaction ? How?
- Will it add value in your day(s)? How?
- Will it give you a greater sense of agency as you live with lung cancer?
Here are a few basic truths about reading scientific research papers.
- They’re hard to read. The language is unfamiliar.
- They follow a set format. Do you know which sections to pay attention to, or why?
- Data can be daunting. Do you understand statistic significance? Can you interpret complex charts?
Why listen to me? I’ve spent approximately 8,000,000 hours learning to do qualitative research in the social sciences. Quantitative research is different: it’s filled with numbers, charts, and statistical representations.
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Hell, No, I’m Not Reading Research Papers!
A friend and I discovered last winter that neither of us tried any longer to keep up with reading in the field. There’s too much, coming too fast. Even professionals feel overwhelmed.
At a webinar last year, I asked a research-oncologist how much time he spends reading research articles. He rolled his eyes and said, “Way too much.” (If I’m going to read challenging stuff, it’ll be for the philosophy course I’m auditing, not stupid cancer.)
Alternatives to Reading Research
Start with patient-centered advocacy and education organizations.
- Lungevity offers information and all kinds of help for survivors and their caregivers, from phone support to monthly meetings with other survivors, an online forum, webinars, etc. It also posts info on new developments.
- GO2 Foundation, a “go-to” for living with lung cancer, offers support, information, and advocacy activities along with regular webinars.
Facebook groups specific to your mutations may also be valuable– though beware of drama. I’ve left some because I felt worse after visiting than before. Aside from being information hotbeds and advocacy clearinghouses, each group raises money to fund mutation-specific research.
Besides, why read articles when I can hear or watch researchers discuss research presented at major annual conferences?
These include podcasts and YouTube videos from major conferences, including ASCO, the American Society of Clinical Oncology, ESMO, the European Society of Clinical Oncology, and IASLC, the International Association for the Study of Lung Cancer. IASLC podcasts seem numerous and varied.
I like two specific podcasts:
- Lung Cancer Update. I’m interested in hearing one from a week ago: Special Edition — Key Presentations on Lung Cancer from Recent Major Conferences
- Lung Cancer Voices Canada offers a great selection of topics. For example, The Best of 2024 WCLC & ESMO. If You Want To Be One of the Cool Research Kids….
If You Want to be one of the cool research kids
Excellent! And, there are some things you might want to remember.
- Know what you want to learn before reading.
- Stick to peer-reviewed articles (Here’s a quick video.)
- Focus on recent studies.
How to Make Sense of a Scientific Article
This is a great overview of how to read– and understand– a scientific article. You can see the standard sections of an article in the illustration below. On the website, the diagram is live. You click on each section of the article, which opens to a bullet-point description of the section.
And, here’s a shortcut that’s time-honored by grad students:
- Read the abstract and intro.
- Skim the methodology and results.
- Focus on the discussion.
- Summarize, in your own words, what the article says. Why does it matter?
Be careful to read what’s actually there, not what you hope to see. Understand a study’s limits. Science grows slowly; most papers advance the field a few inches, maybe a foot or two. And, an article that reports on results of an ongoing study is significant because of what it adds to the cumulative story of that study.
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In Conclusion
Everybody lives with lung cancer differently. If you are a research reader who shares what you find, thank you!
If you’ve read this far, thanks! I hope you’ve learned something (even if it’s just how much weight I should lose). Be cautious of information you find on the internet. There’s a lot of crazy out there….
Giddyup, It’s Cake Time!
There’s always time for cake! Here’s a recent one– a western-themed buttercream transfer with a few sad-looking cactuses. Hope the young person liked it!
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