Stephen Western is a dedicated advocate for people dealing with brain cancer. He started this work in February 2013, when his friend was diagnosed with a type of brain tumor known as an astrocytoma. In order to help her, he began to learn all he could about the science of astrocytoma treatment.
Stephen soon realized that many more patients might benefit from his growing knowledge, so he created the website Astrocytoma Options to share this information and update it as new research emerges. He also helps run another site that focuses on the multi-drug “cocktails” often used in brain tumor treatment.
Although Stephen has no formal scientific training, he is able to help patients better understand their treatment options and stay up-to-date on the latest treatment research. To learn more about his work, I interviewed him via email:
Before diving into cancer research, I was living on a small island off the west coast of Canada, making a living as a gardener-for-hire, and playing music and studying languages on the side. I had studied various scientific subjects on my own time over the years, for example soil science and the science of climate change, and through studies like these honed my research skills.
At the time of my friend’s diagnosis (grade III anaplastic astrocytoma), I was unfamiliar with even the basic terminology in the field of neurooncology and had not heard the terms “astrocytoma” or “glioblastoma” before. After realizing the seriousness of the diagnosis, and out of intense concern for my friend’s well-being, I decided to devote myself full time to studying the disease in every aspect (biology, preclinical therapeutics, clinical trials, etc.).
After eight months of full-time study, I realized I had accumulated enough information that was not accessible to most patients (hidden away in scientific journals) to make a website worthwhile. My brother, a website designer, chose the actual design for the website and showed me how to use it.
The “cocktails” blog was a spinoff of a 230-page thread on the CancerCompass forum called “Glioblastoma…Our Cocktail & Story.” Because “the cocktail thread” had essentially become a forum of its own, and because there was no way to search keywords within an individual thread at the former website, we moved over to Blogger, where the discussion now benefits from features such as the ability to upload images, and labeling of posts as a form of indexing.
Without formal scientific training, how were you able to get to the point of being able to help patients successfully navigate brain tumor treatment?
It was a steep learning curve and required a lot of persistence. In my spare time I had been studying languages, and science for the average person is a different language. I had to learn the terminology and basic concepts in a hurry. I’d sum it up as a combination of patience, persistence, and attention to detail. I’ve always been a self-motivated learner, and this endeavor was a continuation of my habit of intense research into subjects outside of the school or work environment.
The “cocktail approach” is still very much experimental and I don’t claim to have succeeded in identifying the best way to approach it. I consider myself as mainly a “medical interpreter” who points out, interprets and makes accessible scientific research that would otherwise not be available to the average patient.
It looks like you work hard to keep both sites up to date. Is this a solo effort, or do you have anyone else helping out?
Astrocytoma Options, apart from my brother’s help in getting it set up, has been a solo project, although I’ve always benefitted from correspondence with patients and caregivers, who sometimes direct me to research I otherwise would have missed. The blog is much more of a collaborative effort. I’m certainly not able to answer every question that comes up, and often other members of the blog are able to fill in the gaps.
Among the patients you’ve helped, have you noticed any common themes to their questions and challenges?
Certainly. For starters, there is the issue of finding doctors who are willing to cooperate with the multi-agent “cocktail approach” that makes use of evidence related to non-standard “repurposed” drugs and supplements. Sometimes this evidence is preclinical laboratory evidence or it might come from early-stage clinical trials. Patients are often much more willing to put together experimental protocols using non-standard drugs and supplements than their doctors are, but in order to do this well and relatively safely, a doctor’s expertise is often desired and sought out.
But patients and caregivers are often unable to locate a doctor who is willing to venture beyond the “standard of care” for their disease, even when that standard of care is ultimately ineffective and gives little chance of long-term survival. This is especially important when clinical trials are not an option for an individual. The patients/caregivers are often left feeling that they are on their own in devising treatment approaches that are rooted in some form of scientific evidence but have not been proven in large phase III clinical trials, and are therefore still considered by the medical community to be unproven and not worthy of discussing with patients.
This is the vacuum that my website and the blog are designed to fill – to provide science-based information and informed discussion on options that doctors might be unwilling or unable to discuss for whatever reason.
Can you share the experiences of any particular patients you’ve helped whose stories may have some important insights for other patients?
There is one story in my mind right now in particular, and it is a personal one close to my heart. A friend of mine was diagnosed with glioblastoma multiforme (GBM) after I had already started researching brain cancer for a different friend. She called me the same day she received her diagnosis and I directed her to a clinical trial down in the U.S.
The catch was, that in order to qualify for the trial, her surgery had to take place at one of the trial locations in the U.S. as well, and Canadian insurance would not cover a surgery outside of Canada. Her husband sent out a letter to friends and anyone he knew, the letter went viral, the entire community went into fundraising mode for her and the community ended up raising sufficient funds to pay for the expensive surgery down in Los Angeles.
She enrolled in the clinical trial (testing a treatment called DCVax), which she did well on, though it was not ultimately enough to prevent recurrence. Ultimately in fact none of the treatments were enough, but the way she handled herself through the entire ordeal is a lesson for anyone, not only cancer patients. The entire story is remarkable and is documented in videos on their Facebook page, as well as news articles and a promotional video from U.C. Los Angeles. Words can’t do justice to the quality of her spirit, but you can watch the videos and see it for yourself.
How has advocacy work affected your life, and how do you see it continuing in the future?
Advocacy work has profoundly altered my life. It consumes most of my time on a daily basis and my work in cancer research is now actually how I make a living. It has brought me into contact with many people I now consider as good friends, and I’ve had the satisfaction of making a real difference in many people’s lives.
On the flip side, I spend unhealthy amounts of time in front of my laptop, and after four years of doing this it is probably time to restore some balance, meaning more time outside getting exercise and less time in front of a computer screen. However, I see myself continuing this work indefinitely, as I believe the work fills a niche that few others are filling.
I don’t have grand plans about what I’ll be doing in the future, I just keep plugging away at it, in the hopes that in so doing I’m providing a valuable service to people in very difficult situations, who often feel like they have very few options left.
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.