Bald ain’t beautiful

Can freezing the scalp prevent or minimize hair loss associated with chemotherapy? A story in the Minneapolis Star Tribune on Sunday explored the concept of Penguin Cold Caps, which are being tried on an experimental basis. Two Twin Cities women are raising money to make this option more readily available for patients who want it.

Hair loss, or alopecia, has long been known as one of the less desirable side effects of cancer treatment. Most standard chemotherapy drugs work by attacking rapidly dividing cells, but unfortunately they don’t differentiate between cancer cells and normal cells, such as those in hair follicles, fingernails and the lining of the mouth. As a result, the patient’s hair often falls out during treatment. Although it’s almost always temporary and the hair grows back once chemotherapy is completed, this isn’t necessarily much comfort to someone who wants hair now, not six months from now.

The theory behind the Penguin Cold Caps is that by freezing the scalp, the chemotherapy can be prevented from killing cells in the hair follicles and the hair won’t fall out.

Whether this might help large numbers of patients remains to be seen. The article was careful to point out there have been few studies that rigorously examine the benefits:

Doctors aren’t so sure. Hair loss, especially among breast cancer patients, is an extremely painful and emotional issue, they say. They don’t want to give patients false hope for a costly therapy that may or may not work. “It’s difficult, in the sense that there is no good scientific evidence one way or the other,” said Dr. Tom Flynn, an oncologist and president of Minnesota Oncology. “All we can do is advise them on what is known and not known, and they have to make their own choice.”

According to the article, the technique is being used in Europe. A handful of small studies suggests it helps some – but not all – patients.

Scientific evidence aside, it’s intriguing that there’s a formal effort under way to address one of the more difficult aspects of cancer treatment. I’m not sure chemotherapy-induced hair loss has been taken all that seriously by the oncology community. Since it has few, if any, medical implications, it tends to be regarded mostly as a psychosocial/cosmetic issue – hard for many patients to deal with but temporary and reversible. The upshot has been a dearth of good research, not to mention effective strategies, on how to minimize this particular side effect of cancer treatment.

The other thing that caught my attention with this story is that in spite of efforts to reshape the message into Baldness Is Beautiful, hair loss remains extremely distressing for a significant percentage of patients. Although the Strib article put most of its emphasis on women undergoing treatment for breast cancer, I think it’s pretty safe to say chemotherapy-related hair loss is difficult for people regardless of what type of cancer they have. I’m sure it’s very difficult for many men too. On some of the online cancer forums, reflections about hair loss are often very personal and wrenching.

Certainly there are people who decide to flaunt their baldness. “I’m going through cancer hell. Why should I hide it? Let my bald head be a warning to you!” wrote one woman in an online cancer community for young adults. Wrote someone else: “You are fighting for your life – you should be comfortable, not worry about how you look.”

Many people simply don’t feel this way, though. One woman wrote, “Except for my initial diagnosis, I can’t remember ever feeling more hopeless, more trapped, more defeated, than when I started losing my hair.”

Carrie Greene, who was profiled in the Strib story, has already been through chemotherapy once. The second time around, she wanted to try the Penguin Cold Cap because, as she told the Strib, she hated being bald. “I didn’t want to be stared at again,” she said. I suspect there are some people who would rather refuse chemotherapy or seek dubious alternative treatment than experience the wholesale hair loss that so often accompanies chemotherapy.

The bottom line, it seems, is that the emotions surrounding chemotherapy-related hair loss are highly individual. Well-meaning people might say it shouldn’t matter if patients lose their hair during cancer treatment, and indeed as a society we’ve become much more willing to embrace this fact. But if the response to the aptly named Rapunzel Project is any indication, the prospect of hair loss during chemotherapy is still difficult and emotional for many folks. Losing their hair doesn’t make them feel militant or empowered; it’s a blow to their self-image that often makes them feel bereaved and vulnerable.

I’ll give the last word to a coffee-shop manager who spoke up in an online forum about the need to recognize that everyone has a different comfort level with this most personal of issues.

Each person “has to do what’s right for them,” she wrote. “I’ve had many people tell me to go without the wigs (one even going so far as to accuse they are a ‘crutch’ for me… hey, when YOU have been in that position, THEN you can talk to me about it) but I am the one who would be walking around feeling self conscious and ugly… I am the one who would be dealing with it, not them. So most mean well and I appreciate it… but I need to do what I’m comfortable with, what works for me, what gives me some help in dealing with something I’m still devastated by.”

Photo: Wikimedia Commons

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