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A ROS1+ lung cancer survivor and patient research advocate shares her story at STAT Summit 2026

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On October 14 I gave a brief talk at the STAT Summit in Boston, Massachusetts. You can watch the video here. The text of the talk is behind a paywall on the STAT site, so I’m sharing it here along with the sllides projected during my talk. Hope you find it valuable.

In May I celebrated my 15-year cancerversary. Back in 2011, when I learned I had advanced lung cancer, the majority of people with lung cancer died within a year of diagnosis.  I was 55, younger than the average lung cancer case, and otherwise healthy with no known risk factors. When I first heard my diagnosis, my world turned upside down.

I was considered curable and was treated with chemotherapy combined with radiation. Being a writer and a science geek, I sought to learn as much as I could about my disease. The online lung cancer patient forum I joined informed me about symptoms and side effects, clinical trials, and the newly emerging field of molecular testing.

During a treatment break to allow my blood counts to recover, a 3-inch mass grew on my collarbone. I arranged to get molecular testing through a clinical trial, but all tests were negative. I had more chemo and more radiation. The post-treatment scan showed my cancer had metastasized to my other lung.

A person in the online group was in a clinical trial in Boston and told me I fit the profile of patients who might have cancer driven by a ROS1 rearrangement which occurred in 1-2% of non-small lung cancer cases. I asked my local oncologist about ROS1 testing, but he didn’t know anything about it.  He said I would be on chemo for the rest of my life, which probably would be short.

And then, to quote a favorite Far Side comic, a miracle occurred.

I was visiting my nephew in Denver when I realized the cancer center that had done my molecular testing was nearby. I emailed to ask if I could drop in to say thank you. The researcher who had led the trial met me in the lobby. He told me their lab had developed and validated a test for ROS1, and they had some of my tumor tissue left.

I gave him permission to test my remaining slides. A few weeks later, he called to tell me my tumor tested wildly positive for ROS1, and they were holding their last slot in the ROS1 clinical trial for me.

I started a daily pill called crizotinib on November 6, 2012. I have had no evidence of disease on every scan since. I am not cured. I must continue taking the drug, but I am alive and have a good quality of life.

I hope someday every person living with this cancer will have access to a miracle. Alas, not all people have such good outcomes. Not all are offered biomarker testing or treated by doctors familiar with their subtype of lung cancer. Not all are informed about or have access to clinical trials. Not all respond to treatment or experience long responses.

I decided to give back.  I became a patient research advocate.

A group of five people smiling together at the LUNGevity HOPE Summit in 2015, showing support for those affected by ROS1+ cancer.

In 2015, five people with ROS1+ cancer met in a bar at an advocacy event. We were all on crizotinib, we all had kids at home, and we all had no other treatment options except chemo.  We chose to act.

We started a global Facebook group for people who have ROS1+ cancer, created a website, and began looking for research partners. This evolved into The ROS1ders, a global group of patients and caregivers that seeks to improve outcomes for all ROS1+ cancers through community, education, and research.

In 2017 we co-created the ROS1 Cancer Model Project in partnership with nonprofits and researchers. Back then, only a few ROS1+ cancer models existed. The project helped create 12 new patient-derived cell lines that have been widely distributed and used for research into acquired resistance, surface-omics, and drug development. Another project, our PRIME Summit, brings our community together to learn about ROS1 treatments and research.

Group photo of attendees at the 2024 PRIME Summit, featuring participants wearing matching blue shirts, gathered together in a conference setting.

But it’s not enough. Two of our founders and many members have died. And living on treatment for years isn’t easy. I’ve had two TKI dose reductions and take prescriptions to cope with side effects. I’m also on a GLP-1 to lose the 70 pounds I gained on crizotinib.

This highlights a challenge of living on the cutting edge of cancer treatment.  Research is big on tracking survival stats, but quality of life for survivors—not so much.

It’s hard to stay in the lung cancer advocacy space long term when you watch friends die on a regular basis.  We advocates do it because so many unmet needs remain. More research needs to incorporate the patient perspective early in the process. More clinical trials need to use Patient Reported Outcomes. More sponsors need to own their toxicities. 

We stay in the cancer space because helping others gives life meaning.

Thank you.

A silhouetted figure walking along a beach at sunset, with soft waves lapping at the shore and a warm glow from the sun in the background.

Why this cancer patient and advocate is walking away from X. (Hint: it’s not politics)

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I’ve been living with and communicating about lung cancer for over 13 years. Since 2011 (the year I was diagnosed) I’ve been active in one or more online lung cancer patient groups. Since 2012, I’ve been blogging and on social media, connecting with the lung cancer community and learning/sharing developments in cancer research. In 2013, I cofounded #LCSM (lung cancer social media) Chat on Twitter and became a co-moderator of its weekly chats. As an active lung cancer patient research advocate, I’ve presented at national and international oncology conferences about using social media in the lung cancer community to improve education, clinical trials., and patient care.

Nowadays I spend most of my social media time in the private “ROS1 Positive (ROS1+) Cancer” Facebook group I cofounded (my ROS1+ cancer is a rarer form of lung cancer) and related online accounts. I know there are data security risks in sharing my cancer journey on public and private social media platforms, but it’s one of the most effective ways to reach other people who are living with lung cancer, especially for rarer subtypes.

All of that is to give you some background about my participation in social media. I’ve been very active online. I don’t sift through random posts about celebrities or debates about news events, but I have been known to spend hours online following developments in cancer research, posts from people attending oncology conferences, and discussions about cancer care from the patient perspective.

I used to do a lot of my research and outreach on Twitter. But due to evolving policies, algorithms, and accounts on X, I now spend almost no time on that platform. The Elon era substantially reduced its usefulness for this lung cancer patient advocate. I’ll try to explain why.

  1. While cancer social media has always had to contend with medical misinformation, it became significantly worse on X after moderation was cut back. I’ve also seen a dramatic increase in hateful comments, personal attacks, and anti-science sentiment. I don’t want to waste my time reading that stuff while trying to find the content I value.
  2. A blue checkmark on an account used to mean that account was owned by a validated organization, agency, or individual that had significant public impact. Patients could distinguish which accounts shared trusted, evidenced-based medical information . Now anyone can buy a blue checkmark, impersonate whoever they want, and spread medical disinformation that is not helpful or safe. While not all patients are successfully treated, the survival rate for lung cancer has increased significantly over the past decade. I’m not the only metastatic lung cancer patient who has survived for more than 10 years thanks to newer treatments like targeted therapies and immune checkpoint inhibitors. Yet I know people who died because they decided to forego an evidenced-based new cancer treatment in favor of some “cure” they found online that had only a few anonymous anecdotes to support it.
  3. When you blocked someone on Twitter, you could no longer see them and they could no longer see you. Now when you block someone on X for malicious behavior, they can still see your posts. I prefer to have more control over who sees my content.
  4. The platform terminated its free API (Application Programming Interface). This disrupted a lot of applications and websites that patient advocates and others used to interact with the platform and archive material from online chats. I have to spend more time to accomplish less.
  5. My X feed used to be filled with content from people I chose to follow. Now it’s filled with ads and people I never chose to follow that don’t interest me in the slightest. I can’t find the content I want, and those who follow me don’t see the content I generate. The only way I can find useful cancer-related content is by using hashtags like #lcsm, but even hashtag-curated content is greatly reduced because so many members of the cancer community have stopped posting on the platform.
  6. As of today, any content posted on X can be used to feed AI engines. While I’ve always known my posts on Twitter/X were publicly visible, it does bother me that the platform would deliberately hijack my content for their own uses without any acknowledgment or compensation.

So, there it is. I want to make a difference in the cancer space, and I have a limited amount of time and energy available to do it. Wading through uncurated content, hostile posts, and medical misinformation isn’t how I want to spend my days.

It’s sad to see the era of Twitter cancer communities end. Twitter was the one place where all stakeholders–patients, caregivers, advocates, clinicians, academic cancer centers, researchers, government agencies, industry, and the general public–could meet and exchange ideas on something that had life-and-death implications for so many (lung cancer is the #1 cancer killer). I hope someday another platform will attract enough participants to once again enable discussions across silos.