Sep 8, 2017
TRANSCRIPT (links to follow)
This is Episode 005 of Glioblast‑O‑Cast: How did I find reliable information about glioblastoma?
Hello, and welcome to Glioblast‑O‑Cast, a podcast about life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I'll answer the question, How did I find reliable information about glioblastoma? In my show notes you'll be able to find a few links to get you started.
At first, when facing a glioblastoma diagnosis most doctors advise to stay away from the internet. They say don't Google; don't look things up. Well, there's a reason for that. Actually, I think there's multiple reasons to not look things up.
First and foremost, this information is really scary. I mean, nearly every study or article I have read begins with the overview of glioblastoma that highlights the average prognosis.
Now the average prognosis seems to vary slightly by resource. I've seen average prognosis with treatment noted at 12 to 14 months or 12 to 16 months, and once I saw the average noted at 18 months. Either way, it's all very short expected survival times, months. They never seem to talk in years. It's always how many months.
I think the doctors don't want their patients to focus on that to become depressed because depression or panic doesn't help treatment. And there are so many unreliable sites without facts to back them up.
But even for the reliable sources, like cancer sites or hospital sites, there's just so much to read. It could take a full‑time job just to slog through it all. It's so easy to become confused between standard or care, new treatment, and various phases of testing and naturopathic supplements.
But in this episode I'm going to talk about how to find good general comprehensive information, and these are my tips.
Even though my doctors cautioned me not to do the internet research, for me it was and is essential to be informed so I can make proper choices for my treatment. But I wanted to be smart about how I went about my research. I came up with some rules for myself.
First, I had to find a way to accept the average prognosis. I had to decide that, okay, the average is somewhere around 14 months, but I plan to fight, to not be a statistic, not resign myself to only 14 months. I know I plan to hang around for a lot longer.
But in doing research, I had to get used to seeing those numbers and just know those scary numbers are not etched in stone. They are not definite.
I also decided that any source of information must be legitimate and trustworthy. For me one big indicator was no ads on the sites pages. These ads to me show that it's possible click bait and promises more than it can deliver.
When looking for information on any potential treatment, I wanted it to be backed by scientific studies, not just anecdotal information or fantastic claims. I need proof.
Big on my list are cancer organizations and teaching hospitals. I have found that with naturopath treatment, my research needs to be especially scrutinizing. I'll go into that more in another episode.
So my overall point with information about glioblastoma treatment is first consider the source. Are they a hospital? A university? A drug company? A non‑profit? A for‑profit?
You need to know where you're getting your information and can you trust them. And the information you find, does it have science to back it up? Are the claims verifiable? Are there scientific papers or articles you can reference when you discuss these treatment options with your doctor?
The biggest thing for me was to educate myself on some not‑so‑easy‑to‑read pieces of information. And that only could happen once I got okay with seeing the bad outlook for glioblastoma over and over and over.
A final bit of advice: Limit how much time you spend per day doing the research. Set aside 20 minutes, a half an hour, an hour, but don't spend the whole day throwing yourself into research. You still have to live day to day to day. So I say be very careful with how much time you spend on your research.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 5.
Theme music for Episode 005: “Buddy” Bensound.com
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Some Hospital and Institute websites with comprehensive information
University of Iowa: https://uihc.org/brain-cancer-program
Massachusetts General Hospital: https://brain.mgh.harvard.edu/
UC San Diego Health System: http://neurosurgery.ucsd.edu/glioblastoma/
The University of Maryland Medical Center: http://umm.edu/health/medical
The University of Texas, MD Anderson Cancer Center: www.mdanderson.org/cancer-types/brain-tumor.html
Barrow Brain and Spine: https://www.barrowbrainandspine.com/the-patient-experience/second-opinion/ They have a program for a second opinion without the expense of travel, for a low-cost review of medical files and scans.
Dana Farber Cancer Institute: http://www.dana-farber.org/Health-Library/Ask-the-expert--q---a-on-brain-cancer.aspx
Cancer Treatment Centers of America: www.cancercenter.com
Organizations
American Brain Tumor Association: www.abta.org
The Brain Tumor Alliance (Australia): www.btaa.org.au
Brain Tumor Network: https://braintumornetwork.org/
Cancer Horizons: www.cancerhorizons.com/finanical-help-cancer-patients/
Cure Brain Cancer Foundation (Australia): www.curebraincancer.org.au
End Brain Cancer: http://endbraincancer.org/portfolio-item/glioblastoma-a-patients-guide/
International Brain Tumor Alliance: www.ibta.org
Kanker (The Netherlands): https://www.kanker.nl/bibliotheek/glioom/wat-is/7670-glioom
Other links for support
Greg’s Mission: http://gregsmission.org/ Free guidance from a 13 year glioblastoma survivor.
Phil’s Friends: http://philsfriends.org/ Providing support and hope to those affected by cancer.
The Darren Daulton Foundation: www.darrendaultonfoundation.org committed to providing financial assistance to those who suffer from brain cancer and brain tumors
Tug McGraw Foundation: www.tugmcgraw.org
The mission of the Tug McGraw Foundation is to provide resources and hands-on support, foster understanding, promote awareness, and stimulate research and scientific collaboration to improve quality of life for people with brain-related trauma and tumors.