Treating a Rare Form of Liver Cancer: Bita’s Story

A bowl slips from your hand and shatters on the floor. You’re momentarily annoyed, but you sweep up the pieces, throw them out, and forget about it.
Bita Javadizadeh Brun
Bita Javadizadeh Brun and her family
The Japanese method of kintsugi counsels repairing that bowl instead, based on the belief that imperfections are what give an object its beauty. The technique transforms broken vessels into works of art using a lacquer resin mixed with powdered gold. Not only is there no attempt to disguise the damage, but the repair is illuminated.

A friend shared the philosophy of kintsugi with 43-year-old wife, mother, and financial professional Bita Javadizadeh Brun when the friend learned that Bita had been diagnosed with a rare form of cancer called intrahepatic cholangiocarcinoma.

Bita has since become a living, breathing work of kintsugi. Rather than retreating from the world as she undergoes treatment, she has made her misfortune proudly public, spreading awareness and encouraging others to join with her to fight hepatobiliary cancers.

The Vessel Breaks
With her diagnosis in December 2015, Bita’s life shattered — along with the lives of her husband, Henrik; her young sons, Jasper and Cyrus; her parents; her brother and sister-in-law; and her wide circle of friends and colleagues.

Most intrahepatic cholangiocarcinomas, which form in the small bile duct branches deep within the liver, are discovered at an advanced stage. There are no blood or other tests able to detect these cancers early enough to be useful as screening tests.

This was, unfortunately, Bita’s situation: By the time she was diagnosed, she had been feeling unwell for several months and various treatments failed to improve her symptoms. Finally, a series of imaging studies, including an MRI, showed a large growth on her liver and several other smaller lesions, including two on her peritoneum (the lining of the abdominal cavity) and one on a vertebra.

Henrik sent the MRI results to an old college friend, MSK radiologist Jeffrey Girshman. Dr. Girshman responded immediately, advising that Bita seek treatment with Ghassan Abou-Alfa, a cholangiocarcinoma and liver cancer expert.

A biopsy was performed and revealed a cholangiocarcinoma. Bita soon started on chemotherapy under the care of Dr. Abou-Alfa.

Repair Begins
“From day one, I knew Dr. Abou-Alfa was the doctor for me,” says Bita. “Although the disease had metastasized — so officially, it was stage IV — his attitude was, ‘You’re young, you’re healthy, and we’re going to work together to beat this thing.’ His attitude has remained the same to this day.”

Dr. Abou-Alfa put her on a regimen of two chemotherapy drugs, gemcitabine and cisplatin. Recent scans have shown that she is responding well to therapy and that the cancers are shrinking. Dr. Abou-Alfa also had Bita’s tumor analyzed using MSK-IMPACT® testing to ensure the identification of possible new therapies for her down the road.

“The medications took a toll initially,” she says, “but after the first few rounds I’ve felt great, I’ve regained my appetite, and I’m ready to fight.” However, Bita’s meaning extends beyond simply fighting for herself — she is working to see that others also have the best possible chance to survive.

“Dr. Abou-Alfa believes that with the focused collaboration of scientists and clinicians, the MSK team he leads can make rapid strides toward more-effective treatments and, someday, cures for hepatobiliary cancers,” she says.

“The close working relationships at MSK between cancer scientists, medical oncologists, surgeons, radiation oncologists, and other specialists put us in a unique position to make significant progress against hepatobiliary cancers,“ Dr. Abou-Alfa adds. “We have great opportunities today to develop novel therapies and improve the effectiveness of current therapies, as we simultaneously advance our understanding about the basic biologic mechanisms of these diseases.”

He further explains that research funding has lagged despite the worldwide impact of these cancers. “While they are more and more on the radar of the big pharmaceutical companies,” he says, “we still have no celebrity spokesperson raising awareness, and there’s not much knowledge out there among patients and the public.”

That’s why philanthropic support plays such a vital role — a fact Bita recognized very quickly.

Golden Seams
According to the National Institutes of Health, a rare cancer is one with a prevalence of fewer than 200,000 affected individuals in the United States. However, taken together, these rare cancer types account for approximately half of all cancer diagnoses —and research on many of them is underfunded, often leaving patients like Bita with limited treatment options.

Cycle for Survival, a national effort to fight rare cancers through a series of indoor cycling events, raises funds for pioneering research into these diseases. One hundred percent of every dollar raised is allocated to promising studies led by MSK within six months of each year’s events. Since its beginnings in 2007, Cycle for Survival has raised more than $100 million and has funded 100-plus clinical trials and transformative research studies that have already led to new and better treatments for patients.

“A cancer diagnosis can make you feel helpless,” says Bita’s brother, Kamran. “None of us in my sister’s inner circle have medical training, and we quickly realized that, beyond finding the right doctor and following his advice as closely as possible, there wasn't a clear way for us to fight back. But what we saw during the first or second meeting with Dr. Abou-Alfa, when we pressed him on what was needed to have better treatment options available, was that we did have the opportunity, the drive, and the resources to support his vision for research. In a very real way, then, we could help after all.”

Bita and her family decided that their first major effort would be to create their own Cycle for Survival team — Team BJB. On March 13, 2016, 56 riders joined them and Dr. Abou-Alfa at Equinox, Cycle for Survival’s founding partner, to ride, sweat, and cheer one another on. They raised more than $183,000. That figure made them one of the top-performing Cycle for Survival teams nationwide, not only in dollars but also in the number of gifts — more than 600 — and the number of riders.

“The gifts people gave were amazing,” says Bita. “For example, Kamran is a college professor and we were getting pledges from his former students. And I received gifts and messages from people I’d gone to grade school with and from friends of those friends. It’s been extraordinarily uplifting. On my toughest days, thoughts of the event and all that we accomplished together have elevated my spirits and put me back on a path to recovery.”

“It’s opened our eyes to something even bigger,” Kamran adds. “There was an opportunity here for the love of our friends and family to become the healing that Bita needs, both in terms of the hundreds of donations we’ve received so far and in terms of the psychologically sustaining social connections that have been renewed and strengthened in the process. We believe this is just the beginning. Our astonishing Cycle for Survival success has given us a new sense of purpose, some serious ambition — and, best of all, a path forward.”

Beautiful seams of gold, glinting in what had been the cracks in Bita’s life.

Light Between the Cracks
Bita, along with her family and friends, will ride in Cycle for Survival in New York City again next year and will also add a ride in Los Angeles. She has more fundraising ideas she’s developing, including the use of social media to expand their reach.

“Bita is an incredible woman, exemplary in every way, and working as partners — doctor and patient — we’re going to conquer this,” Dr. Abou-Alfa concludes. “We’ve seen the impressive results of the research that has been directed at more common cancers — breast and colon cancer, for instance. Now is the time to replicate those results in hepatobiliary cancers.”

“There is a crack in everything. / That’s how the light gets in,” wrote famed singer-songwriter Leonard Cohen. Healing is the process by which we knit together the broken places in us after we’ve been wounded. The image of kintsugi is sometimes applied to life as a symbol of the good that can come out of pain. And the art of kintsugi often results in an object more beautiful than the original, one that is cherished both for its history and its resilience.

All of which describes Bita Javadizadeh Brun and her quest to make the world a better place.

Visit Bita’s giving page to join her in the fight against hepatobiliary cancers.


Original Published Link Treating a Rare Form of Liver Cancer: Bita’s Story

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