Hair Loss

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

MAY 08, 2018

For many people, losing hair from chemotherapy is the worst part of cancer treatment. This can be true for men as well as for women, and they have the added twist of others' assumptions that they won't mind because some men are bald. That thinking goes: Since some men are bald and others choose to shave their heads as a style, you won't mind losing your hair to chemotherapy.

Of course that is not necessarily true. Some men mind a great deal, and most women are very distressed. I have known a few women over the years who declined treatment for this very reason. Some of them had early stage cancers, so they were declining something that might be life-saving. Others were living with metastatic disease and knew that their cancers would eventually kill them; several of them said very bluntly that they didn't want to die bald. (As an aside, not all chemo drugs cause hair loss, so it is often possible to use drugs that won't have this effect.) I am currently working with a delightful woman who is a very young 81, and she has refused chemo because of her unwillingness to lose her lovely long hair--proving, once again, that you can't ever make assumptions based on someone's age or culture or education level or anything else.

But back to hair loss. For those of us who are treated with drugs that are certain to cause our hair to fall out, it usually helps to have as much information as possible. Not that we can be in control as we go through cancer, but we want as much knowledge as possible, so that we can sort of plan to deal with it. Given my two rounds of chemo, in 1993 and then again in 2005, I had two very different hair experiences. The first time, the standard of care for early breast cancer was a drug combination called CMF. It resulted in ongoing hair thinning, not a dramatic falling out. In some ways, this was even more stressful and upsetting, because no one knew exactly how much hair she would lose. Some women ended up with just a little hair loss, some lost a lot, and some were bald by the end of the six months of treatment. I was somewhere between the second and third groups. My bathroom looked like the site of a cult ritual, a bad one, almost every morning, as the shower floor was covered with hair, and hair dotted every surface. I remember hiking and being on a Maine mountain in a big wind. As I literally watched strands of hair flying by me (while I wrestled to tie on a scarf to limit the damage), I began to sing a composed-on-the-spot version of an old favorite. Rather than my heart in San Francisco, I lost my hair on Cadillac Mountain... Humor always helps. In 2005, the standard of care had changed, and the drugs were sure to cause total hair loss. That time, I knew how to take unhappy control, and had my hair buzzed, and then my scalp shaved not quite two weeks after the first infusion. I remember looking in the mirror and thinking that I looked just like my brother. Ouch.

But here's the thing: we get through it. Whether we end up wearing wigs or hats or scarves or are brave enough to not cover our heads, the time passes, and eventually our hair grows back. Knowing that will happen is not much solace as it falls out, but it is the truth. And we surely appreciate it when it returns. I remember talking to an attorney who insisted that she would not leave her house for months once she was bald. I told her she would be surprised, and she was. Her life continued pretty much as usual.

As an aside: I have a good hand-out re how to plan and manage hair loss. Email me: hhill@bidmc.harvard.edu if you would like me to send it to you.

From Web MD:

Grieving Hair Loss During Cancer Treatment
By Wendy Baer, MD

People dealing with cancer experience all kinds of feelings about losing, and re-growing, their hair during treatment. While everyone's reaction is uniquely their own, there are some feelings and thoughts that are fairly common. Here is a common reaction:

Susan lost her hair during a stem cell transplant for leukemia. What bothered her the most about her hair loss was the way people would look at her if she did not cover her head with a hat, wig, or scarf. "Some people stare at me. They seem to be confused, like they are trying to decide if they should ask what happened. Other people look at me with pity, they immediately know I am a cancer patient and feel sorry for me. I don't want people to feel sorry for me, it makes me feel like more of a patient than a person."

Because of her concern about people's reactions, Susan wore a wig all day, and sometimes all night if she was staying over with friends, even if it meant her head was hot and itchy. "I don't want to be different or abnormal. I don't want to be known only as a cancer patient." Susan not only had to deal with chemotherapy and hair loss, but also other people's reaction to her hair loss. "If they see my bald head, then they want to talk about someone they know who has cancer. I can't get a break from cancer because my bald head!"

Read more at WebMD's Cancer Blog.

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