These breast cancer patients found their own ways to cope with the next hurdle, losing their hair

When Judy Weinstein was diagnosed with breast cancer in 2014, chemotherapy was an essential part of her treatment. She was anxious about the nausea, lack of energy, and all the unknowns that come with a cancer diagnosis.

Then there was the matter of  losing her hair.

"Growing up, you spend way too much time thinking about your hair and how it makes you look and feel," said Weinstein, 53, from Mount Airy. "The thought of losing my hair felt like I was going to be losing a part of my identity."

So, like others facing the same issue, she decided to take charge of the situation, and immediately cut her long hair shorter to start getting used to the coming change.

"I was told I would start to lose it roughly 17 days after the fifth treatment, and sure enough, 17 days to the day – on Jan. 1 – I started losing my hair," she recalled.

Chemotherapy drugs work by attacking fast-growing cancer cells. But they also can go after healthy cells that grow rapidly, such as those in hair follicles, explained Angela Jain, medical oncologist at Fox Chase Cancer Center. Not all chemo treatments have this effect, but about 70 percent do, she said. What's more, patients can lose body hair, as well. For most people, though, the hair loss is temporary, with hair regrowing a few months after treatment ends. Even then, the shade or texture of the hair might be different.

"A cancer diagnosis makes people question who they are because it's such an unexpected event in their lives," she said. "When you lose your hair and you look into the mirror, you don't even look like yourself and that adds to the emotional distress."

For some, losing their hair is a deal breaker to accepting chemotherapy, even if it's been shown to be the best treatment for them. Jain tries to sway those individuals with the science, pointing out studies and success rates, but she hasn't always been successful.

It isn't easy, and it isn't for everyone, but there is a way to have chemo and keep your hair — cold caps, first approved by the FDA in 2015. These special gel caps are chilled to very cold temperatures – well below freezing — so they can constrict the blood vessels beneath the skin of the scalp. The cold slows down the hair follicle metabolism, making the hair cells dormant or less active, preventing absorption of chemotherapeutic drugs.

That worked for Jaime Pastore, who was diagnosed with breast cancer in 2017 after a routine mammogram the day after her 40th birthday. Her treatment plan included a double mastectomy, radiation, and four rounds of chemotherapy.

"My hair is very long and anybody who knows me knows that my hair is part of my look,"  the Hatboro woman said. "And, I have an 8-year-old son and I think it would have been horrible for him to see me like that."

For each treatment, Pastore and her husband, Jason, went to the Sidney Kimmel Cancer Center at Abington-Jefferson Health with a cooler containing eight caps rented from Arctic Cold Caps, stored in the dry ice they had purchased the night before. For about eight hours — starting an hour before treatment and ending an hour after treatment — Jason replaced his wife's cap every 17 minutes to ensure it remained at a constant temperature of -13 to -40 degrees Fahrenheit. That meant roughly 30 cap changes for each treatment, putting the used cap back in dry ice to be added again later in the rotation.

To start the process, Pastore put moleskin on her forehead to prevent frostbite, then Jason covered all her hair with a cold cap. On top of that, he added what looks like a swim cap to tighten the whole apparatus. Pastore was surprised that she didn't actually feel cold; but the three tight straps under her jaw that kept the cap secure were painful.

"For a whole day after, it would hurt to talk or eat," she said. "You're sore after a few hours and it's overwhelming."

Another pain was that the expense wasn't covered by insurance. To help cover the approximately $1,500 in costs (about $400 a  month to cover the cap rental and dry ice), Pastore's sister set up a GoFundMe account.

Even with the caps, Pastore thinks she still lost about 10 percent of her hair. Still, she said, the grueling process was worthwhile.

"It was my only hope to keep my hair, for myself and my son," she said. "No one knew I was sick when I was out in public."

A similar system, the Paxman Scalp Cooling System, doesn't require cap changes. With the use of  a compact refrigerator, liquid coolant is kept at a consistent temperature and pumped into a silicone cooling cap before, during and after chemotherapy. But it's not yet available locally.

Richard Paxman, the company's CEO, based in England, expects Philadelphia hospitals to join the more than 130 U.S. facilities with the system in the next three to six months.

Though the caps were only recently approved by the FDA, the concept has been in use since the 1970s, according to a 2017 analysis of numerous studies on cooling.  It's not clear whether cooling caps increase the risk of cancer spreading to the scalp or brain, but studies of breast cancer patients suggest scalp metastases are extremely rare regardless of cooling.

Jain isn't convinced that even a small additional risk is a good idea.  "If you use a cooling cap, does that mean the chemotherapy isn't getting to the scalp and are you more at risk of developing a brain [tumor] or metastatic disease to the skull?"

While studies continue, the issue of how women and men handle hair loss due to cancer treatment remains very personal. When Kirby Lewis was diagnosed with breast cancer in 2012, he had a mastectomy.

But when the cancer recurred in 2016, he underwent 15 weeks of chemotherapy. About eight weeks into treatment, Lewis lost his thick, wavy brown mane, as well as his eyebrows and body hair — yet his mustache remained.

The 58-year-old, from Inwood, W.Va., rolled with the changes. "The reality of cancer is that we'd rather live, so losing your hair doesn't matter so much," he said. "It's part of the process."

As for Judy Weinstein, losing her hair turned out to be a very different experience than she expected.

As she celebrated New Year's Day 2015 with friends after getting a shorter haircut, she included them in the next step, shearing off the rest.

"As my hair fell to the floor, I lost what I thought characterized me, and I gained proof of what truly defines me: family, friendship, and love," she said.