Kathy O'Brien, Who Started Debate on Cancer Bell Ringing, Dies at 55

Nick Mulcahy

July 02, 2021

Katherine O'Brien, who lived with metastatic breast cancer for 12 years and left her mark on American cancer care, died June 19 after a rapid decline in her health. She was 55.

O'Brien served as a patient advocate, blogger, essayist, reporter (including for Medscape), and mentor (to patients as well as physicians) after her diagnosis with de novo metastatic disease in 2009.

In all forums, she was a champion of people living with metastatic breast cancer, who are often unheralded — and even actively silenced — in the broader culture because theirs is the cancer that can't be "beat."

Katherine O'Brien

"People generally don't lean in to hear our stories...most lean far, far away," O'Brien wrote in 2018 on her LinkedIn blog, deftly expressing the aversion that all "metsers" experience at times from others, including survivors of early-stage disease.

Known for her wit and generosity, O'Brien leaned in and found a huge community of friends, collaborators, and admirers, including many physicians, as well as 4000 Twitter followers of her @ihatebreastcanc account.

In terms of accomplishments in the world of cancer, she might be best remembered for starting a national conversation — and altering the narrative — about the widespread practice of ringing "victory" bells in cancer clinics, as well as for goading the National Cancer Institute (NCI) into finally initiating a project to count the number of metastatic breast cancers in the United States, a statistic that has never been fully tallied.

Dozens of people took to social media to laud the Illinois native — and expressed shock that O'Brien was gone.

"One of the first voices in the community of people with #MBC I interacted with. She taught me so much. I'm devastated," tweeted Don Dizon, MD, of Brown University and Rhode Island Hospital in Providence.

Maryam Lustberg, MD, MPH, of Yale Cancer Center in New Haven, Connecticut tweeted that O'Brien left behind a "remarkable legacy."

"She influenced so many of us. One of the most brilliant writers, and the work she did on getting us counted is so important and must be carried on," tweeted Kelly Shanahan, MD, who lives with stage 4 breast cancer in South Lake Tahoe, California, referring to the NCI pilot program that O'Brien spurred to tally metastatic breast cancers.

Stephanie Graff, MD, of the Lifespan Cancer Institute in Providence, Rhode Island, offered an anecdote about O'Brien approaching her for expert comment at the San Antonio Breast Cancer Symposium after a presentation.

"About 4 seconds into my response, she said 'I'm just going to record this' and shoved a mic into my face. My initial reaction, I won't lie, was 'Who is this flaming ball of guts!?' Followed thereafter by 'I really like this woman.' Both impressions held true. Fierce & amazing. Her advocacy lives on," tweeted Graff.

O'Brien first caught the eye of Medscape Medical News in 2014 when she published a satire on pink culture, "Why Can't Every Month Be Breast Cancer Awareness Month?"

"Strong, dark, and hilarious," tweeted Beverly Zavaleta, MD, about O'Brien's essay, which lampoons the commercialized culture of awareness that ignores metastatic disease and turns breast cancer into a "pep rally."

"Obviously, the half a million people around the world who will die from metastatic breast cancer this year are Eeyore-like losers — gloomy people with weak attitudes," O'Brien wrote, referring to the downtrodden donkey in Winnie the Pooh stories.

Zavaleta, who is the author of Braving Chemo , a guide for patients, vowed to keep O'Brien's voice "alive."

New York Times best-selling author and breast cancer survivor Peggy Orenstein also praised KOB (as O'Brien sometimes signed emails to friends) on social media. "Katherine O'Brien, a wonderful writer, a fierce and effective advocate for those with metastatic breast cancer, a woman of great wit and humor, died earlier this month. How better [to describe her] than by her Twitter handle: @ihatebreastcanc. Me too, Kathy, me f'ing too," tweeted Orenstein.

While O'Brien's relationships reveal a very social person, she also knew — and was not afraid to depict — the invisibility and loneliness of living with metastatic disease, especially during the COVID-19 pandemic.

During the pandemic, in the months before her death, O'Brien tweeted out pictures and posts of herself waiting in empty train stations and traveling in mostly empty railcars from suburban Chicago to downtown Northwestern University for chemotherapy.

https://twitter.com/ihatebreastcanc/status/1366779879593803784

Deanna Attai, MD, of the UCLA Jonsson Comprehensive Cancer Center in Los Angeles, applauded that form of advocacy and education.

"The world was on lockdown, but cancer treatment continued. I found those posts both heartbreaking and inspirational," Attai told Medscape Medical News.

A board member of the Metastatic Breast Cancer Network, O'Brien is survived by five brothers and a sister. She was also feted online last week by her former employer, American Printer, a trade publisher, where she was editor-in-chief from 1997 to 2011.

A Dance Party in the Infusion Suite

O'Brien was not the first person to write about the insensitivity of celebratory bell ringing ceremonies at cancer clinics that mark the end of chemotherapy or radiation therapy for patients with early-stage disease. For example, in 2018, Medscape commentator John Marshall, MD, of Georgetown University in Washington, DC observed that those celebrations can "isolate" those who are "not so lucky" (ie, metastatic patients).

However, O'Brien's objection to the practice — and her call to stop it — charged the subject with passion and pathos.

"If I ran a cancer clinic, there would be no bell in the infusion area. I don't care if 'everyone is invited to ring it.' How would YOU like to be there week after week in perpetuity attached to an IV pole as others celebrate their final appointments?" she wrote on her blog in 2018.

"I am not saying it's wrong to celebrate the end of treatment," added O'Brien. "I am saying it's insensitive to have a dance party in the infusion suite in front of other patients who will be reporting for chemo for the rest of their lives. Why not quietly hand out certificates of completion?"

In September 2018, days after Medscape Medical News published a bell-ringing story based on O'Brien's pleas, NBC's long-running morning television program, the Today show, ran a feature on its website on the pros and cons of bell-ringing that highlighted O'Brien. Over the next 2 months, prominent medical journals (including the Annals of Internal Medicine and JAMA Oncology ) published bell-ringing essays, featuring the formerly little-considered perspective of the metastatic patient.

If I ran a cancer clinic, there would be no bell in the infusion area. Katherine O'Brien

Discussions of the up- and down-sides of bell-ringing took place on social media.

"Bell ringing ceremonies at the conclusion of cancer treat: Yea or nay? After reading this [Medscape story], I'm now leaning towards nay or major changes," tweeted David Gorski, MD, PhD, of Wayne State School of Medicine in Detroit, Michigan, at that time.  

Minds were changed about the bells. Arvind Desai, MD, a geriatrician in Maryland, wrote a reader comment to the Medscape story: "I stopped reading after Katherine O'Brien's statement. It's the same as gorging on food in front of a starving family or celebrating a birthday while your neighbor is mourning. She's right."

O'Brien's story challenged the dominant narrative in the media about bell ringing, which has been largely driven by local television news coverage at hospitals in the United States, a spigot of feel-good stories about cancer treatment — with no mention of metastatic onlookers.

Taking on the NCI

American metastatic breast cancer advocates have long decried the fact that the National Cancer Institute does not fully tally the number of metastatic cases. That's because its NCI's Surveillance, Epidemiology, and End Results (SEER) Program only records cases of de novo metastatic disease, which are cancers that are already advanced at the initial diagnosis. Metastatic cases that arise from the recurrence of an early-stage cancer are not counted.

This is important because the vast majority of cases are metastatic recurrences.

Advocate Musa Mayer of the Metastatic Breast Cancer Alliance has summarized the need to fully tally metastatic breast cancer cases in the United States: "What we don't count, we can't plan for."  

Short-changing metastatic cases also has a negative impact on research funding for advanced disease, advocates have stressed.

In 2015, O'Brien did something about it.

She spearheaded the creation of an online petition on the website Change.org calling on the NCI's SEER, the CDC, and all state cancer registries to start counting all people living with metastatic breast cancer, including those whose early-stage disease progressed to metastatic. The petition, which is now closed, collected nearly 12,000 signatures.

The result, according to one advocate, was that the NCI was pressured into a 2017 study that, for the first time, provided an estimate of the number of women living with metastatic breast cancer in the United States.

This year, the NCI announced a pilot program that intends to adjust data collection in the SEER database and fully count metastatic breast cancers.

These two developments — and O'Brien's contribution to them — are landmark events, given the fact that the country's leading cancer agency started collecting cancer data in 1973 — nearly 50 years ago.

O'Brien will be missed, said her friend Elaine Schattner, MD, a breast cancer survivor and former oncologist turned journalist and writer.

It's friendships that make major cancer meetings "real," said Schattner in a tweet showing herself, Kelly Shanahan, and O'Brien at the American Society of Clinical Oncology meeting in Chicago in 2019.

https://twitter.com/ESchattner/status/1406955220446453762

And then Schattner added another message and referred to Kathy O'Brien's shorthand signature: "RIP, #KOB."

Correction July 6, 2021 // Editor's note: An earlier version of this story incorrectly indicated Kathy O'Brien was 56. She was 55.

Friends and admirers of Katherine O' Brien are encouraged to donate in her name to the  Robert H. Lurie Comprehensive Cancer Center of Northwestern University for Metastatic Breast Cancer Research

Nick Mulcahy is an  award-winning  senior journalist for Medscape, focusing on oncology, and can be reached at  nmulcahy@medscape.net  and on Twitter:  @MulcahyNick

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