Is Cold Cap During Chemotherapy Worth It?
The first thought that came to Debbie Ohanian’s mind when her oncologist gave her the bad news; “I don’t want to be bald.”
“I don’t smoke, I don’t drink, I go to the gym and I’m healthy so why was I going to get breast cancer. The odds are pretty bad right now,” Ohanian said.
After a couple of mammograms, an ultrasound, an MRI and a fine-needle biopsy, Ohanian was diagnosed with breast cancer.
“Luckily I had the most common one. It’s been a year and all the vocabulary I once knew I don’t even remember what cancer I had,” Ohanian said jokingly.
Of course following the diagnosis came surgery and then treatment. This is the phase that bothered Ohanian the most; chemotherapy.
“I think the first thing you hear after doctors tell you have breast cancer, I think ‘I don’t want to be bald.’ I basically would have foregone chemo,” she said.
“If you could save your hair, and not look sick, that’s a huge plus. Not looking sick is key. I think that’s a very big thing,” Ohanian said.
Fortuitously, Ohanian’s friend brought up an interesting concept to her.
Ohanian said, “My friend told me, ‘you know, there’s something cold you can put on your head and you don’t lose your hair anymore.”
A simple Google search of ‘chemo no hair loss’ lead Ohanian to Penguin Cold Caps. When spread out, it’s shaped like a lobster’s body, cold caps are scalp-cooling devices cancer patients can wear to either prevent or reduce chemotherapy-induced hair loss.
Made from a “white medical grade hypo-allergenic” flexible plastic material, the Penguin Cold Caps are filled with a special formula of Crylon gel with an “insulated blue nylon cover,” according to the Penguin Cold Cap’s official website. It weighs around 3.3 pounds and requires Velcro fasteners to adjust the cap to fit all head shapes and sizes. But the process, one cancer patient says is a laborious one.
It’s a Labor of Love
September 28, 2011: the day 44-year-old Eileen Abrams of Calabasas received her diagnosis. She’s fighting against Lobular stage two-breast cancer.
“Numbing,” Abrams said as she speaks of the moment she heard of her diagnosis. “Very surreal.”
Abrams began her chemotherapy treatment December 20 of last year. When Abrams asked if she was going to lose her hair, her oncologist brought up cold cap therapy.
“[My oncologist] said that this was an option that somebody else had brought to her and it was an option to explore. Otherwise, I probably would not have known about it,” Abrams said. “I believe my oncologist and if she was going to recommend it, then it’s of worthy doing.”
So beginning her first chemotherapy treatment in December, Abrams concurrently began her scalp cooling treatments with Penguin Cold Caps to save her hair.
“I did it for my kids. So when I’m not sick during my week of chemo…because it’s a pretty bad week… that I’m functioning and I look normal and no one looks at me differently and that is priceless,” she said.
Doctors guarantee hair loss after two weeks of chemotherapy, but even after a month of her third treatment, Abrams still has a full set of long chocolate brown hair.
“I would have been bald by now. I would be bald, and that is the beautiful thing about the cold caps. It’s that if you didn’t know me, you wouldn’t think anything differently,” she said.
To maintain her hair, Abrams goes through a laborious process that doubles her treatment hours.
She rents her Penguin Cold Caps from an out-of-state manufacturer, which delivers her 14 sets of caps.
A day before Abrams’ week of chemotherapy session begins at Tower Oncology in Beverly Hills, she delivers all of her cold caps to her treatment center where an ice chest box specifically designed for cold caps awaits. The ice freezer is set between -30 to -40 degrees below zero, so that the caps are frozen to -28 degrees.
When Abrams arrives for Chemotherapy, she takes Benadryl an hour before starting cold caps and chemotherapy. Then in the second hour, she puts on her first cold cap, which needs to be changed for a new one every 20 minutes. In the third hour, Abrams begins her chemotherapy, which is three hours long. During those three hours, she switches her cold caps every 30 minutes.
“It feels like going skiing. You might be on a ski lift and you’re head is really cold. But it is not so painful,” Abrams said. “After a while your head just gets used to it and you honestly don’t know it’s there. So it just feels cold. You can feel the cold but it’s not in anyway shape or form what I thought it would be.”
Abrams said she thought the cold caps were going to be unbearable. “But it’s not,” she said. “It’s not at all. It’s pretty amazing.”
Amazing because it’s saving her hair, and the most important reason why is because she doesn’t want to be treated or seen like a cancer patient.
“When I see myself I’m happy for the most part,” Abrams said. “But I think it’ll be a million times worse if I saw myself bald right now. I think it’ll be a million times worse.”
Because having a positive mental attitude Abrams said has helped in the healing process.
"No one would know [I’m battling breast cancer]. I think that having the cold caps makes your spirit,” she said. “One of my girlfriends kind of referred to the cold caps as cheating cancer; that I didn’t get all the full experiences of cancer. [And that] I’m cheating the losing the hair experience.”
But sometimes, there are experiences that are not necessary to endure; especially one that can affect one’s health, and Abrams swears by it.
“I think it is amazing. I think people need to know it is a labor of love. But I think that it is a saving grace for me,” she said. “I hope more people find out about it because I’ve seen the results in people and I felt it was worth the try. I owed it to myself to try, and I’m glad I did.”
Abrams was fortunate enough to find out about cold cap therapy through direct recommendation from her doctor at Tower Oncology in Beverly Hills. But not all cancer patients are aware that such products like the Penguin Cold Caps exist.
Rapunzel, Rapunzel, Why Doesn’t Anybody Know?
Though it may still be in the shadows, cold cap therapy is not a newfound invention. The Annals of Oncology published a series of studies dating back to the 1970’s about scalp-cooling methods that prevent temporary chemotherapy induced hair loss.
It states, “between 1973 and 2003, 53 publications and three personal communications were found reporting cooling results in more than one patient.”
The average success rate of those studies done before 1995 carries a success rate of scalp cooling to be 56 percent and from then onwards it increased to 73 percent. With more recent studies, the success has increased 20 percent. The Penguin Cold Caps claims it has a success rate of 90 percent if used correctly with given procedures and instructions. These studies are based off of the success it has gain in Europe. Cold cap therapy is a well-known option for cancer patients as many insurance companies cover costs.
However, it is not the same case in the United States. To raise awareness of Penguin Cold Caps and cold cap therapy is the Rapunzel Project. Breast cancer survivors Shirley Billigmeier and Nancy Marshall established it, when Billigmeier discovered about Penguin Cold Caps and its founder Frank Fronda.
Billigmeier successfully maintained her hair with Penguin Cold Caps and ever since, she and Marshall have been working together to raise awareness and availability of the headgear.
“Scalp cooling, when tried in the U.S. in the 1980’s was not very successful,” Marshall said in an email interview. “The new generation of cold caps and cold therapy machines do not have FDA approval, so despite widespread use in other parts of the world over the last 15 years, there has been little support for them in the U.S.”
While all materials used in Penguin Cold Caps are FDA approved, the brand and device itself is not, which makes it harder for patients to ever hear about cold cap therapy.
There’s where the Rapunzel Project hope to fill in the gaps. Marshall said the organization works closely with Kenra Professional, a manufacturer of salon hair care products to promote cold cap therapy.
“This is an ideal way to reach people who may need this information. Hair stylists often know much about their customers’ personal lives, and also know when they need to shave their hair or purchase a wig,” she said. “We think patients should know they have the option to save their hair. Cold Cap therapy isn’t right for everyone, but most patients don’t know there is a choice and we think that is wrong.”
Of course, from a patients’ perspective, knowing that such options exist will make a difference in how he or she will be perceived by others for the next six months receiving treatment. But being that the caps are not FDA approved, doctors at a fork having to decide what is best for their patients.
A Doctor’s Point-Of-View: “There are things medically more important than hair loss”
Oncologist Agustin A. Garcia of USC’s Norris Comprehensive Cancer Center and Hospital says he’s known about Penguin Cold Caps for five years now, and personally, he recommends them to his patients.
“They work!” Dr. Garcia said. “The principles of the cold caps are that you have to be sure that the scalp is cooled down in a homogeneous way all over the scalp. And the new caps can do that.”
If the key to a successful cold cap therapy treatment is cooling the scalp homogenously, then that might have been the foil in the previous cold caps used in studies in the U.S. The Penguin Cold Caps Fronda has created is successful in this sense, he said.
“The challenge of a cold cap is that the process of very uncomfortable. How they work is that you’re trying to decrease the amount of chemotherapy that reaches the hair follicles,” Dr. Garcia said. “So to do that you cool the scalp, then there’s less blood flow going into the scalp and hair follicle.”
The process using cold cap therapy can prove to be a challenging task. When cooling the scalp, the entire body temperature also decreases.
“Many patients come with heating blankets because they’re freezing while you’re cooling down the head. Most of my patients in the end decide you know what, it’s not worth it to me. It’s too much hassle,” Dr. Garcia said.
Dr. Garcia says he always let’s his patients know about cold cap therapy and that there is an option to save one’s hair. But it all comes down to how important the issue of hair loss is for a particular patient.
“From my experience, almost 80% of the patients say, ‘I’m okay. I’m going to lose my hair and it’ll come back. So be it,’” he said.
But for breast cancer survivor Cindy Black, it’s a different story. When she was diagnosed with breast cancer in 2009, she said she imagine how sad she would feel when looking herself in the mirror bald.
“I’m a really private person and I don’t want to be walking down the street bald. Because everybody would know why I’m bald; I had cancer. I value my privacy and I don’t want strangers knowing my personal life,” Black said.
Other factors led Black to forgo chemotherapy; now, she is a healthy woman who advocates cold cap therapy and assists patients who use Penguin Cold Caps during chemotherapy treatments.
“I just imagined myself walking by a mirror and seeing myself bald. And how sad I would feel. And then I thought about walking by a mirror with my hair,” Black said. “And just, it wouldn’t make you feel sick you just feel so much more positive about the whole experience.”
Many patients agree with Black that a positive mental attitude has helped them endure through cancer treatment.
“To me cold caps are the most important things getting me through my experience,” Ohanian said. “But if you could save your hair, and not look sick, that’s a huge plus. Not looking sick is key. I think that’s a very big thing.”
A Possibility: Scalp Metastasis
A primary concern among oncologists with the use of cold caps is scalp metastasis. By freezing the hair follicles and restricting blood flow to the scalp, the cold caps prevent the chemotherapy drugs from circulating to the scalp.
In that way, doctors fear there is a chance that a tumor may form in the areas that the chemotherapy drugs do not target. While this is not the definite reason why doctors shy away from discussing cold cap therapy with their patients, it is still a concern.
“So that’s been a theoretical concern forever, if you look at the facts, they don’t support that,” Dr. Garcia said. “So every oncologist who has been in practice long enough will say patients develop a scalp metastasis even though they never used the cold cap.”
In a follow up study published on the Annals of Oncology, researchers discovered that among the 83 patients who used Penguin Cold Caps, only two patients with breast cancer did “develop a biopsy-confirmed skin scalp metastases.”
Therefore, the percentage of a scalp metastasis occurrence resulted to less than 1 pecent—0.88 percent to be exact.
“It’s rare that the cancer will go to the scalp but every oncologist who has been in practice long enough will say I’ve seen it with no relation to the cold caps,” Dr. Garcia said.
Scalp metastasis may just be a scapegoat as to why scalp-cooling therapy may still be wandering in the dark.
“I tell my patients there is a potential higher risk of having scalp metastasis, but I also tell them that the risk is still extremely low,” Dr. Garcia said. “It’s much lower than one percent. That to me is not enough to suggest to my patients as long as they’re informed. Then they can make the decision.”
But in a different perspective, Dr. Garcia said he understands why some doctors tend to not talk about cold cap treatment.
“I think there are three main reasons why doctors don’t talk too much about cold caps. One is that doctors minimize the hair loss,” he said.
He believes by reassuring patients that their hair will come back, it puts the patient at ease and reprioritizes their focus to other health side effects such as nausea and vomiting.
“Most of my patients in the end decide you know what, it’s not worth it to me. It’s too much hassle,” Dr. Garcia said. “They are frequently not covered by insurance. They might say you know what it’s not worth it.”
“But bottom line, I think cold caps should be at least discussed with every patient that’s going to go through chemotherapy that’s going to go through hair loss,” he said.
In Conclusion, Patients Say It’s Worth It
Cold caps require cold cash. They cost $35 rent per month per cap and the usual amount patients need for one chemotherapy session is 14.
But for Ohanian, it’s been only a positive experience worth every dime.
“It’s a fantastic product and it just needs to be standard of care here like it is in Europe so that we don’t have to look at pictures of sickly people,” she said.
Because for many patients, not feeling and looking sick has been the key ingredient to their recovery.
“People who saw me didn’t know I was going through anything. The unfortunate thing is that I’m probably the only person who went through chemo and didn’t lose 20 pounds,” Ohanian said laughing aloud.
“I kept my hair. It works; it’s amazing. I don’t understand why doctors don’t have this and tell every woman, man or child about it.”
Reach contributor Irene Byon here.