For many women, the prospect of being able to prevent hair loss during chemotherapy can make a huge difference in how we anticipate our treatment. Receiving a diagnosis is challenging enough, but then when we hear that part of our protocol is going to involve chemotherapy – drugs that are injected into a vein or port, or taken orally, with the goal of killing cancer cells throughout the body – it can add a whole new level of fear into the equation. With the onset of this possibility, our illness becomes something that we may be forced to wear in the outside world, taking away our ability to have discretion and often causing significant anxiety around how others may respond.
Chemotherapy is somewhat controversial due to the various side effects and long-term complications it can cause. It doesn't discriminate, meaning that while chemo drugs are often successful at destroying cancer cells, depending upon the specific drug, they often kill non-cancer cells as well. Because our hair is filled with healthy cells that are constantly growing and dividing, these cells often become damaged during treatment. This damage can cause our hair to fall out and in some cases, remain impaired even long after treatment is over. But now we have the option to try and preserve our hair during treatment with cooling caps, also referred to as cold caps or scalp hypothermia.1
What are Cold Caps?
Cold caps are tight-fitting, strap-on hats filled with a cold gel, chilled to between -15 to -40 degrees Fahrenheit. At these cool temperatures, blood vessels under our scalp constrict, reducing the amount of chemo that reaches the hair follicle. With less chemotherapy in the follicles, it’s less likely for our hair to fall out.2
For decades, Europe and other countries, have been successfully using scalp-cooling techniques to reduce chemotherapy-induced hair loss. However, it wasn’t until December 8, 2015, that the FDA approved the first cooling system in the United States called DigniCap.
Controlled studies of older forms of scalp hypothermia (such as using ice packs) have had conflicting results. However, some studies of newer, computer-controlled cooling cap systems have shown benefits. Recent studies of women getting chemo for early-stage breast cancer have found that at least half of the women using one of these newer devices lost less than half of their hair. The most common side effects have been headaches, neck and shoulder discomfort, chills, and scalp pain.6
While hair loss may appear marginal when weighed against the greater issues we face in a cancer diagnosis, many women feel as though it forces us to "wear our cancer." Through baldness, wigs, and/or scarves, we feel as though it adds more injury to an already insulting disease. By the end of a course of chemo, many women will have lost not only the hair on their heads, but eyebrows, eyelashes and pubic hair as well. The psychological impacts of these losses if often profound.
Vanity aside (though not to be minimized or discounted), retaining hair can provide an important level of privacy throughout treatment. As Dr. Hope Rugo of UCSF Medical Center states, “Losing your hair is a declaration to the world that you have cancer.”4 And even when wearing a hat or another type of head covering, many cancer patients will lament about the “Oh, you have cancer” looks that they receive from strangers on the street. In other words, controlling who we tell and when can be a great comfort, especially in professional environments or in families with young children.
It is also the belief by some women that “If I don’t look sick, I may not feel as sick.”5 For some, this notion may sound downright nuts, as anyone who’s been through chemo knows you definitely feel sick. But the impact of looking in the mirror and not recognizing our own reflection can be incredibly traumatic, and sometimes, maintaining our visible identity can lead to a greater sense of confidence or strength during an otherwise vulnerable time. It can also enable us to separate our "cancer selves" from our "non-cancer selves" in moments. Not that we ever forget about our diagnoses, but if our looks haven't changed as noticeably externally, we can have moments of just being a mom or a professional in the outside world.
The downside of scalp cooling systems is that they require planning and quite a bit of effort, and not all hospitals or cancer centers offer them. With each chemo session, we have to wear the cold caps before, during and after treatment, and the amount of time required is based upon our drug protocol, dosage and hair type. Each cap is worn for approximately 30 minutes and needs to be replaced whenever it warms up, which means that a hospital or facility needs to have either special freezers (a regular house freezer won’t get the caps cool enough) or dry ice in a cooler (which we might have to even supply ourselves). The process also requires that a nurse or loved one is by our side to help replace the caps when needed.5
While cold caps currently work for about 50-70% of patients, studies are underway to learn more about the efficacy of the devices and which drugs respond best. And when it comes to cost, it can vary based on the manufacturer, the number of chemotherapy sessions and how many months we'll be using the caps. Some women say the expense is comparable to having a really nice wig made, and on occasion, it's possible for insurance to cover the treatment, so it's always good to check with our providers.7
If you think cold caps might be right for you or a loved one, check out these resources for more information and potential financial support:
HairToStay is a non-profit dedicated to increasing access to scalp cooling technologies and improving the patient experience. They spend most of their money on financial aid for patients.
“The human spirit is stronger than anything that can happen to it.” – C.C. Scott