When Charinus Johnson was diagnosed with breast cancer last year, she knew she was strong enough to deal with the formidable challenges ahead. But she did not want to do it without her short, dark brown curls.
I just couldnt have it. I knew I could overcome breast cancer but I had to look fabulous while fighting that battle, said Johnson, 38, the director of operations for the Dan Marino Foundation. It was my hair. It is part of the essence of being a woman and I didnt want to lose that, too. You lose so much during cancer.
A friend of Johnsons had read about cold cap therapy in a magazine. Johnson researched the therapy on blogs and told her physician at Memorial Breast Cancer Center in Pembroke Pines that she wanted to try it.
I did it for 18 chemo sessions and I dont regret it, said Johnson of Tamarac. I didnt lose any of my hair. By the end it was all there and I felt great.
Johnson used a scalp cooling device that helps prevent hair loss during chemo. The cap, made by the Penguin Cold Cap Co., is strapped onto a patients head during the chemo sessions. It freezes the scalp to decrease the chemo drugs that reach the hair follicles. Inside the cap there is a special gel pad that remains flexible at extremely cold temperatures.
My job is to educate the patient that shows interest in the therapy and inform them about the options they have, said Holly Wilrodt, who is based at Memorial and works for the U.K.-based Penguin Cold Cap. Once they decide to go with the therapy, then I help them in every step of the process.
Although the treatment is not new trials date back to the 1980s it isnt very well known. Some physicians have expressed concerns with the cold cap therapy because they fear that rogue cancer cells could make their way into the scalp and later metastasize.
Dr. Charles Vogel, a veteran oncologist specializing in breast cancer with the University of Miami Health System, said some specialists might not feel comfortable because the Food and Drug Administration hasnt approved the therapy.
We live in a very litigious society. If we condone [the therapy], if we prescribe it, then we have a legal responsibility, said Vogel, who has had three cancer patients use the therapy. If a patient is willing to accept the risk, that is the patients decision.
However, there are no major risks associated with the therapy, said Vogel and Dr. Alejandra Perez, an oncologist with Memorial Breast Cancer Center.
Back in the 1980s, there were reports of a small percentage of patients who used the cold cap therapy and later had their cancer metastasize in the scalp, Vogel said. But, Perez noted, later research yielded different results.
The few patients who had metastasis in the scalp, had metastasis somewhere else in the body, said Perez, who is conducting her own research on cold cap therapy at Memorial. I have seen the data that is available and I am comfortable with my patients using the therapy. So far the risk of metastasis in the scalp is less than 1 percent.
For Susan, who works in the finance department at a Broward municipality, the issue was keeping her cancer diagnosis private. She often speaks before city government meetings.
I didnt want to look weak or get sympathy looks, said Susan, who asked that her real name not be used. I also only wanted to share my battle with cancer with a few people. Not everyone needs to know.
Susan, 55, just completed her fourth chemo session and has four remaining. Wilrodt accompanies her during the Friday morning sessions, and places the cold cap on her head. Susan said that, at first, the treatment feels like a brain freeze.
But it isnt hard to get used to, she added.
So far, she hasnt lost any hair.
My hair is getting a little thinner but I still have it and it gives me some control over my life. I dont see a dramatic change when I look in the mirror. It gives me a sense of normalcy.
The therapy can be costly, ranging from $1,600 to $3,300, depending on the type of treatment and number of sessions. Insurance companies dont cover the cost.
Not everyone can afford it, we know, Perez said. We are actually looking for ways to get grants so that we can offer it to patients who may want to do it but just dont have the money.
Susan wouldnt have gone for it if she didnt have a steady job.
If I werent working, would I spend the money on the therapy? Probably not, she said. But in my condition and my circumstances, it is money well spent.
Johnson and Susan said their decision to use the cold caps wasnt about vanity, but of projecting an image of strength, both internally and toward others. Johnson, for one, didnt want to be viewed as bald and pale, an image she said is often associated with cancer patients.
Some people couldnt even believe that I had cancer because of the way I looked, Johnson said. I didnt fit the stereotype.