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How Engaged Patients Improve Cancer Treatment Outcomes

Featuring: Ari Akerstein, Software Product Manager

In short

Ari Akerstein was diagnosed in 2018 with an aggressive blood cancer (Diffuse Large B-cell Lymphoma) and shares how he took an active, questioning role in his own care — reading research, seeking multiple second opinions, and using deliberate decision-making frameworks — to reach complete remission without a stem cell transplant or additional chemotherapy. His story offers concrete strategies for patients who want to engage more deeply with their treatment decisions rather than leaving everything to the system.

•Sort your decisions into 'one-way doors' (hard to reverse, like starting a treatment) and 'two-way doors' (easier to undo) — take more time and gather more input before crossing a one-way door.
•Ask your care team to collect extra biopsy tissue so additional tests, such as a second pathology review or a liquid biopsy, can be run later if you need more information.
•Seek second opinions — sometimes on the same biopsy material — especially when doctors disagree or your gut says something doesn't add up.
•Pull in 'smart generalists' from your personal network — people experienced at making decisions under uncertainty — to help you think through your options, even if they know nothing about medicine.

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“I felt the burden of ownership for caring for my own health.

Meeting Summary

In 2018 Ari Akerstein, a software Product Manager in Silicon Valley (at places like Facebook/Meta and @Walmartlabs, IncludedHealth), was diagnosed with an aggressive blood cancer (Diffuse Large B-cell Lymphoma, DLBCL), which can be lethal within 6-12 months. Over the course of several months he had to go from being the healthy dad of three young kids to navigating his healthcare decisions and making complex treatment decisions.

Many patients who are diagnosed face a similar “bolt out of the blue”. Some react with denial that there is a problem. Some trust their care to their doctors and the medical system. A rare few engage actively in their care decisions. Ari is a leading example and role model for the engaged patient.

He took an aggressive "rogue" approach to navigate his care, leveraging the problem-solving approaches he had learned as an entrepreneur and product builder.

•Questioning, challenging, thinking for himself, from the bottom up, from first principles, about what was happening, combined with a distrust of the medical system; diving deep into the details to understand his disease, reading the research papers and not being scared of the jargon; bridging between molecular biology, molecular pathology, and clinical oncology

•Finding treatments he didn't like, and being scrappy and inventing one (e.g., laparoscopic surgery)

•Focusing on a positive attitude

•Becoming much more intentional about good diet and exercise Tactics, Decision-Making Approaches

•Developing and implementing deliberate decision-making frameworks to navigate his care and drive better outcomes for himself, such as the distinction between “two-way doors” (reversible decisions which you can make quickly) and “one-way doors” (most medical decisions, which are irreversible)

•Leveraging his friend and expert network to help him make decisions, especially “smart generalists” – people who don’t know anything about healthcare, but they make a lot of decisions under uncertainty, and have a track record of doing that well

•Getting the right treating physician, including pulling through a physician social network and shifting from an excellent community hospital setting to an academic research cancer center

•Finding his therapy, including pushing back on recommendations, in some cases from the leading institutions/Centers of Excellence, by doing research and getting “second opinions” Tips, Tricks, Hacks

•Converting hard things, like getting chemotherapy, into events

•Sending out an email to everybody in his network, then launching a blog

•Ensuring that the surgeon collected extra tissue from a biopsy to be able to run more tests

•Pushing to get more diagnostic tests, e.g., liquid biopsies What were the results of his approach?

•Complete remission

•Avoided stem cell transplant OR Clinical Trial OR more chemotherapy - all were recommendations from leading doctors at academic centers

•Modified a surgical protocol in collaboration with his surgeon, resulting in a much less invasive approach

•Made beautiful connections and memories

•Top fundraiser for the Leukemia and Lymphoma Society in the San Francisco Bay area post treatment due to sharing his story widely How is Ari sharing what he learned?

•Compiled his journey into an ebook - (free) download at Chemolog

•Blogging at Rogue Patient https://ariakerstein.substack.com/

•Building the CancerHacker Lab/Accelerator

•Developing a company to help with diagnostics navigation

•Consulting informally to cancer patients What can you learn from Ari’s story?

•Active/empowered patients get better results.

•You have more agency than you think.

•Many of the industry's problems are man-made and result from system failures.

•Discover frameworks anyone can use to become a more deliberate decision-maker. What can you do to learn more?

•See other examples of engaged patients, such as Mark Taylor, Robb Owen, and Brian McCloskey.

•Join the discussion at our Cancer Patient Lab discussion hub here.

•Read Ari’s blog at Rogue Patient https://ariakerstein.substack.com/ The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes KEYWORDS people, decisions, brad, pathology report, outcomes, ari, question, kaiser, felt, oncologist, work, clinical trial, ucsf, care, bit, ended, diagnostics, system, doctor, patients SPEAKERS Ari Akerstein (70%), Brad Power (9%), Chris Apfel (7%), Allen Morris (7%), Rick Davis (3%), Bill Paseman (2%), Brian McCloskey (1%), Roger Royse (1%) CHAT CONTRIBUTORS Allen Morris, Alexander Lalov, Ryan Moon, Rick Davis, Noel Resch SUMMARY The conversation revolved around Ari Akerstein’s personal experiences with cancer diagnosis and treatment, with a focus on the importance of patient-led communities and personalized medicine. Ari shared his experience with non-Hodgkin's lymphoma and the lessons he learned. The speakers discussed challenges and opportunities in scaling innovation in healthcare, emphasizing the need for navigation and integration of multiple tests and interventions from a patient's perspective. They also highlighted the importance of informed and engaged patients in achieving better outcomes, and the potential solutions for implementing personalized medicine in clinical practice. OUTLINE Ari Akerstein introduction and his story in navigating the healthcare system.

•Ari Akerstein shares his experience with aggressive blood cancer and lessons learned.

•He was diagnosed with non-Hodgkin's lymphoma.

•A nurse navigator at Kaiser Permanente scheduled his chemotherapy session without properly orienting him.

•His initial reaction to his cancer diagnosis was feeling resigned but determined to fight the system.

•He prioritized keeping his network updated on his health journey, sending an uncomfortable email to his contacts. Managing health crises through email updates, blogging, and a positive attitude.

•Ari Akerstein received support from friends and strangers after sharing his cancer diagnosis through email updates and a blog.

•The support he received helped him process his thoughts, make difficult decisions, and feel motivated by the goodness coming from the universe.

•He focused on mental game, positive attitude, and decision-making during cancer treatment.

•He drew a napkin sketch to help him approach decisions intentionally and deliberately. Decision-making strategies for cancer treatment.

•Ari Akerstein reflects on his family's medical history and the importance of making informed decisions when facing cancer diagnosis. Some decisions are “one-way doors,” some are “two-way doors”.

•He uses a pyramid analogy to describe how he triangulated information from various sources, including oncologists and trusted friends, to make decisions.

•He sought advice from "smart generalists" to help make medical decisions.

•He used a decision tree to evaluate potential outcomes of treatment and work. He considered the role of regret in checking decisions he made. Cancer treatment options and surgeon selection.

•Ari Akerstein struggled with self-injections and found ways to cope with the treatment.

•He flipped his chemotherapy experience into a series of memorable events, inviting friends and colleagues to join him and creating a window into the process for them.

•He negotiated with a surgeon and found a laparoscopic option (with an open surgery path), reducing risk and improving recovery.

•He sought a better treatment approach after a biopsy revealed residual cancer activity after completing first-line treatment. Cancer treatment options with conflicting opinions from doctors.

•He sought second opinions (4 total) on his pathology report after doubts raised by doctors. One of the keys to his successful outcome was getting new data: he had a lab run another pathology report on the same biopsy tissue as the original lab.

•He sought advice from smart laypeople and experts on treatment options for his rare blood disorder. The key was laying out the situation and assessing areas of converging vs. diverging perspectives. Cancer treatment options and lifestyle changes.

•Ari Akerstein emphasizes the importance of getting a second opinion (sometimes multiple such opinions), and using a deliberate decision-making process when faced with a medical diagnosis.

•He suspected misinterpretation of pathology results due to differences in opinion among pathologists.

•He shares his experience with a pescatarian diet and exercise, noting the intentionality of his lifestyle changes, and that it’s impossible to attribute positive results to these changes. For example, he questions the effectiveness of green tea steeping for more than 10 minutes, citing scant evidence but acknowledging a possible placebo effect.

•He built up his strength, understanding the cumulative damage multiple rounds of chemotherapy would incur on his body. Kaiser Permanente's healthcare quality and accessibility.

•Kaiser Permanente's flexibility and convenience may come with limitations in care quality.

•Ari Akerstein and Rick Davis share experiences of being blocked and sabotaged by medical professionals.

•Akerstein found a way to get access to treatment through a former colleague at Stanford. Using technology to improve healthcare outcomes.

•Ari Akerstein shares his unconventional background in fitness and product management, from starting a small equipment company to pursuing graduate degrees in molecular biology and math research.

•He shares his personal journey in healthcare, from bench research to product management roles at big companies.

•He reflects on the access gaps he experienced during cancer treatment, motivating him to help fix disparities in healthcare.

•Ari Akerstein and Brad Power discuss the challenges of building technology to improve healthcare, with a focus on diagnostics and enabling founders to deliver better care.

•Akerstein shares his experience in health tech and the importance of working closer to a consumer model, with a focus on enabling an ecosystem of innovation. Personalized medicine, patient engagement, and healthcare quality.

•Brad Power and Chris Apfel discuss the challenges of navigating multiple cancer tests and integrating results.

•Chris Apfel praises community health care providers for their cost-effectiveness and quality of care.

•Apfel questions the effectiveness of enrolling patients in clinical trials for better outcomes. Empowering patients through informed decision-making in healthcare.

•Chris Apfel believes patient engagement leads to better outcomes, and suggests collaborating on a publication or podcast.

•Ari Akerstein presents on accelerators and takes questions from the group.

•Bill Paseman, a rare kidney cancer survivor and engineer, takes a DIY approach to informing himself about his care.

•Ari Akerstein and Brad Power suggest automating the process to reach a broader scale of people, including those with limited education or access to Centers of Excellence. Cancer treatment processes and language barriers.

•Allen Morris characterizes Ari Akerstein and Brad Power as "systems thinkers" who try to solve cancer problems through decision processes.

•Allen Morris believes that the lack of communication among medical professionals with different specialties is a significant issue in cancer treatment, likening it to the Tower of Babel.This is especially evident in regards to molecular tumor boards.

•Allen Morris and Ari Akerstein discuss the challenges of communication in medicine, including language barriers and biases.

•They suggest the need for a universal language and a more collaborative approach to decision-making in medicine. Personalized medicine, diagnostics, and AI in cancer treatment.

•Allen Morris highlights the importance of bridging basic molecular biology and molecular pathology in cancer treatment.

•Bill Paseman discusses using LLMs in tumor boards to address scalability and rare capabilities, such as molecular pathology.

•Ari Akerstein shares his personal experience with limited diagnostic options for prostate cancer. Advanced diagnostics for cancer detection and personalized medicine.

•Ari Akerstein wants a diagnostic platform that provides personalized test recommendations and data analysis to optimize cancer treatment.

•He desires a platform that integrates with the medical system to minimize interface and provide actionable insights.

•Optimize costs, outcomes, and health with emerging tech, leveling the playing field for most people.

•Participants in the accelerator could help stress test ideas and provide insights based on their own knowledge and expertise.

Full transcript

Brad Power This is the Cancer Patient Lab. Before we get started with Ari Akerstein telling his story of the rogue patient, and how he's solved his own problems, and wants to bring it to other people, we will do a quick bit of housekeeping. This is not medical advice. This is information that you can take to your medical team to help you in making decisions.

The Cancer Patient Lab is a patient-led community, all volunteers, and we would appreciate any donations that you might make, which you can do through our website. Ari and I were introduced by a mutual friend, an innovative doctor, and I learned that he is a lymphoma survivor as I am, and as he will explain.

Like many of us, as a cancer survivor, Ari has witnessed the problems in the way that patients experience our healthcare system, firsthand, intensely. He is also by background a product manager from Silicon Valley. He has the Silicon Valley software perspective on developing apps and entrepreneurship. He has combined those two things to talk about some ideas that might be useful to people.

We've been collaborating to develop this notion, both for him and his startup ideas, as well as the idea of creating an accelerator of like-minded founders who have similar needs. Ari Akerstein 2:13 Let me just start off by saying it's really nice to see you all. Allen, I know we're on many threads, so good to put a face to a name. I hope this will be useful to this group.

From the few sessions I've sat in on, this is really like the top 1% group of patient citizen scientists. I have been nothing but impressed, and so it’s a little bit intimidating to be here, but a privilege nonetheless. I want to make sure that this is as valuable as it possibly can be to this group.

I will go through my own personal journey, how I got here, some of the lessons that I experienced and some of the approaches that I took in dealing with my own large B cell lymphoma, an aggressive blood cancer. When you ask the mandatory question to doctors; what's the likely outcome in the “do nothing case”? The answer: you have six to 12 months. This is a very, very aggressive situation.

I'll talk about some of the lessons and approaches that I took that worked for me. I hope that you find them useful and also very open to hearing about your approaches and if they diverge from the things that I've done. And then, as Brad alluded to, we'll talk a little bit about the accelerator that Brad and I are kicking off. We're in the initial stages, and so we'll give a little primer on what we’re doing and the approach we’re taking.

It’s always dangerous to start with a quote, because it's probably Mark Twain or Lincoln or somebody said it. In this case, it's Churchill, apparently. ” The context for me was I had just turned 40. I was a new dad living in San Francisco. I was working in Silicon Valley at places like Walmart Labs and Facebook and startups and doing that whole thing.

” I was avoiding going to the doctor, thinking it was nothing, it would pass, and relying on the knowledge that I was generally healthy. Then my wife probably saved me by saying, “You're being a very typical guy. ” There’s no heroics in that! ” I remember very distinctly I was biking to work in San Francisco in the South of Market area. I saw my doctor’s number pop up, so I dropped into a happening coffee shop.

He told me the news, and I was just in utter disbelief, shock, not really understanding, like what was up and what was down. I felt myself separating from the rest of the buzz that I’d normally be a part of, just isolated, sinking and feeling very heavy as if the gravity dial just got turned way up. From a chronological standpoint, I got this test result that I did not understand from my PCP, which just goes to show how naive I was.

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