Deborah Cohan danced to Beyoncé’s hit “Get Me Bodied” with her nurses in the operating room before she had a double mastectomy in November 2013. The video got more than 8 million views and coverage on the “Today” show.
Cohan was admired for confronting her breast cancer with an uplifting resolve many would find difficult to muster. But while Cohan said she was most determined to focus on her mindset, the UCSF obstetrician had an extra tool helping her get through the chemotherapy that followed her surgery: she was able to keep her hair. This is thanks to a trio of Bay Area Jewish women: a surgeon, a philanthropist and a former JCC president.
Chemotherapy takes a serious toll on the body. For women especially, the loss of hair during chemotherapy can be one of the most painful side effects.
“If you have to wear a wig or if you’re wearing hats then everyone knows you have cancer,” said Laura Esserman, a breast cancer surgeon at UCSF. Esserman referred to this as an “invasion of privacy,” adding that patients’ sense of wellness is often tied to their outward appearance.
Five years ago Esserman mentioned to her friend Bethany Hornthal that European hospitals used scalp-cooling medical devices to help chemotherapy patients keep their hair. Hornthal, a past president of the JCC of San Francisco, was eager to work on bringing the devices to the United States.
“Women turn down chemotherapy because they’re going to lose their hair,” Hornthal said. “I thought, ‘Here’s a way I could potentially help make a difference in how people have to deal with a devastating disease like cancer.’ ”
It has been understood for many years that cooling parts of the body with ice can reduce the impact of chemotherapy drugs in those areas, and manually-frozen cold caps — essentially ice packs molded to fit on your head — have been used by cancer patients to protect their hair for quite some time. But Hornthal said that European hospitals provide caps hooked up to cooling machines, which are less labor intensive for patients who otherwise must store multiple cold caps in a cooler and swap them out during treatment.
Hornthal approached Bay Area philanthropist Ingrid Tauber about funding a clinical trial that could pave the way for Food and Drug Administration approval. A trial at UCSF tested the efficacy of the Swedish-made DigniCap; four other medical centers ran studies of their own.
While Dignitana, the makers of Digni-Cap, eventually began covering much of the cost associated with gaining FDA approval, Tauber’s support was essential to getting the initial trials off the ground and ensuring the early trials could compare DigniCap to manual cold caps.
“This scalp cooling device enables women to make decisions about their care, their presentation to the world and their dignity,” Tauber, president of the Laszlo N. Tauber Family Foundation, said via email.
The trio helped shepherd the device through the FDA process after the clinical data was submitted in early 2015 until approval was received in December. While hair loss is not prevented entirely, and effects vary across patients, Esserman said if a woman can keep half or more of her hair she can return to her normal appearance in months rather than in a year or more.
“I basically looked the same throughout,” said Cohan, the dancing patient from the video. She added that she was especially grateful her children did not notice a dramatic change in her appearance.
While the DigniCap could cost $1,500 to $3,000 depending on the number of rounds of chemotherapy, Tauber said she is now working on establishing a national fund to cover the cost for women who would otherwise be unable to afford it.
Tauber added that the project of bringing a scalp cooling device to the United States and establishing a fund for its use proved a perfect intersection of her career as a psychologist and role as a philanthropist. She cited findings that over half of women describe hair loss as the most traumatic impact of chemotherapy and that almost 10 percent refuse treatment due to that fear.
“Those are unbelievable statistics underlining how important it has been to offer women an alternative to this dreaded consequence,” Tauber said.
Helping women preserve their hair was especially resonant for Esserman as a Jew. She recalled a patient who had survived the Holocaust and, after having her head shaved by the Nazis, vowed to never voluntarily subject herself to hair loss.
“When people want to torture someone they shave their heads to humiliate them,” Esserman said. “Some say hair loss is not that big a deal. Well, actually it is a really big deal.