Hair Loss: A Cancer Conundrum

“Hair brings one’s self-image into focus; it is vanity’s proving ground. Hair is terribly personal, a tangle of mysterious prejudices.”
~Shana Alexander

“The hair is the richest ornament of women.”
~Martin Luther

For years I have been educating people prior to receiving chemo and informing them of the possibility of hair loss. Initially, I was surprised by the depth of emotional reaction to the loss of hair; I didn’t understand why this was such a big deal. Not faced with losing my own hair, I was thinking about it purely from the rational, bigger picture perspective.  I thought “hey, we can cure your cancer with this chemo and that is what is loss is insignificant if it means that this treatment can save your life!”  My perspective was reinforced by having seen people who could not be cured of cancer and would gladly have accepted the sacrifice of hair for a longer life.  I also oversimplified the transient nature of the problem, saying “your hair will grow back!”  This perspective, although not totally wrong, was short sighted. It’s much more complicated. I have since realized that hair loss can mean a lot of things. It can be a glaring reminder that there is a bigger problem. Hair loss is like taking a bull horn and announcing in every public place you enter, “I have cancer!” The looks, the stares can act as constant reminders that you have cancer, making this fact omnipresent and inescapable. Losing your hair can actually hurt. It can also hurt when it grows back. I didn’t know either of these things for a long time. Patients don’t tell you EVERYTHING and, having never lost my own hair, I just didn’t know.

There are ways to help get through the loss of hair; they can be a great help to many, but are not perfect.  Wigs, a seemingly easy solution, can be itchy and hot, not to mention surprisingly expensive. Another potential solution I’ve been introduced to more recently is the use of cold caps. Cold caps are special hats that you make cold in advance and then wear during a chemotherapy infusion. The idea is that the caps cause vasoconstriction, thereby reducing blood flow to the scalp, limiting the amount of chemotherapy that permeates that area, and reducing hair loss (or preventing it altogether). There are problems with cold caps and I have not yet seen complete prevention of hair loss with their use. But, for some women (and men), this is a potential alternative to complete loss of hair as a result of chemotherapy.

I asked several of my female patients who used cold caps to talk to me about why they made the decision to try and prevent hair loss.  The universal theme was that these women did not want to allow the loss of their hair to define them as victims of cancer or to dictate how they felt about themselves.  They felt that losing their hair would make leaving the house and being in public more difficult and that this would then make them feel more depressed. These women felt that cold caps were a way to fight back and take some measure of control in a situation that so readily feels out of control. They felt that the cold caps and the logistics that are required with their use allowed them to focus on something other than the cancer and the treatment.  As I mentioned though, these same women didn’t find cold caps to be perfect and, in fact, sometimes found them painful. Imagine having ice on your head for several hours! Even after using cold caps, most women had some hair thinning, bald spots, or near complete hair loss.

Clearly, if you have not been faced with or gone through the loss of your hair, it is difficult to fully relate to the experience.  I hope that the two pieces below help to illuminate. They were written by two different women, both being treated for breast cancer, who had different experiences as far as hair loss is concerned.

I am beyond grateful to the four women who contributed to this piece. You inspire me. - Caring For Cancer


Cold Caps and Chemotherapy by Tricia D.

The following piece was written by Tricia D. who used cold caps to try and prevent hair loss as a result of chemotherapy, which she received for breast cancer.

So, you've just been diagnosed with cancer.

It's such a daunting moment, with so many things to take into consideration. Life, death, the various surgery options, medications, and the myriad of side effects that go along with them. Hair loss is one of them, and will undoubtedly consume a large percentage of your thoughts.

Maybe it seems trivial and vain to be concerned about losing your locks, but it's not. Cancer should not be a vacuum, where everything in your life ceases to exist. To keep from feeling nauseous, the oncologist gives you a pill. So, if you can keep your hair, why shouldn't you?

Consider the benefits of keeping your hair. You can choose who you tell about your diagnoses. And, if you have a job, it can be particularly helpful when going to the office or meeting with clients -- you just don't look as sick as someone who is bald. It's also convenient when doing such routine things as going to the grocery store or getting a pedicure. No one is giving you those curious side glances, wondering internally if the person is currently going through chemo.

Having said that, using cold caps to curb hair loss is not for everyone. It's expensive, a lot of work, and frankly, it has mixed results. Plus, some women embrace going bald, and look absolutely gorgeous doing it.

If you should decide "cold capping" is for you, keeping your expectations in check will help tremendously. At many points during the journey, I questioned whether it was worth it. Every day, I lost a handful of hair, developed a new bald spot, and fretted over the process of getting ice, loading the cold caps into the car, and dragging them into the office. Any hiccups along the way with your treatment can end up throwing the whole process off, too.

I can see a point in the future when every infusion room will be equipped with caps or a cold air machine that will make the process seamless and not fringe. But right now, unfortunately, the burden is on the patient. Additionally, instructions are typically found on the Internet or passed around via word of mouth, so let's face it, they are less fact-based and more fiction, with every person developing their own style. Therefore, there's wildly different outcomes.

Here's what you can expect: You'll need six caps, and at about $80 apiece, expect to pay about $500 in equipment costs. Then, you'll need dry ice prior to every treatment. That costs about $60 a pop. In total, over eight treatments, you'll spend at least $1,000.

The day before your treatment, you'll have to go to the store to get the ice, chop it up and place the caps in the cooler overnight. If they aren't stored correctly, it will be very difficult the next day to get them on because they are hard as a rock. During the infusions, you'll have to switch out the caps every 20 minutes. If you are not manic about getting the ice right up against your roots, you will lose your hair in that location. You do this for up to two hours after your treatment has ended.

Exactly 10 days after my first treatment, I started to lose some hair. It was slow at first, and then really accelerated. A week after my second treatment, I started to wear a bandanna to cover up my bald spots. Losing your hair slowly is painful. It's a constant reminder, and you'll see it everywhere, in bed, on the bathroom floor, and in the toilet, where I made a daily pile.

Almost every week, I wanted to shave my head and forget about it. A strong support network will help tremendously. I would not have been able to do it without my husband, who got the dry ice the night before and helped me switch them out the day of. For some reason, the ice, the cooler, the caps reminded me of what was to come -- the chemo -- and therefore, I really couldn't stomach dealing or touching them before or after the treatment day.

A few friends, who recently, went through cold capping, were also my saviors. They helped me power through when I didn't think it was worth it anymore, and motivated me to keep going. Without that sounding board, I don't know if I would have made it.

What they were telling me, and now I can see in hindsight, was that it was worth it. Two weeks after treatment ended, I got a haircut. It was short...very, very short, but I had no bald spots and I completely stopped wearing hats and bandannas. I know for a fact that some people never knew I was going through chemo, and now I even get compliments on my pixie cut. Some of my other friends had much better results and never needed to use a bandanna.

In all, cold capping offered me a huge distraction from what was really going on...chemo and cancer. Perhaps, I could go as far as saying it offered a positive thing to worry about. And, I never truly went bald. I never had to look in a mirror and see that image. Hair loss is an odd thing. Every woman will react differently to the various drug cocktails, so if you have the financial flexibility and the motivation, it's definitely worth considering.


Not Just Another Bad Hair Day by Bridgette Stahlman

The following piece was written by Bridgette Stahlman, she sheds light on what it was like to loose her hair as a result of her treatment for breast cancer.

As a woman in my mid-thirties (or actually late thirties!), I anticipated having my share of bad hair days.  However, I never thought about what it would be like to have no hair days.  Yet, here I was, 38 and facing 16 rounds of chemo that would definitely wreak havoc on my hair.  With a new cancer diagnosis, I was facing a bi-lateral mastectomies, 12 rounds of Taxol, and 4 rounds of Adriamycin/Cyclophosphamide (dose dense), and I was more fearful of losing my hair over my boobs.

In preparation for losing my hair, I did what I have come to find out, most women with a new cancer diagnosis do, I cut my hair.  Now, my hair was not too terribly long to begin with, but I did not want to clean up after more hair than I needed to.  The next thing on my list was Christmas card pictures.  My dear friend took our family pictures and it was a wonderful experience.   I also went wig shopping with my husband.  As awkward as that is, we had a good time and experimented with some different looks.  In the end, we stuck with something chin length and basic in color.  Well, except for the additional blue wig we purchased!

So, one week from chemo starting my hair is short, my wig is purchased, and the date of my first chemo is set.  The doctors and nurses told me that I would start losing around 14 days after my first chemo, which is exactly what happened.  What they did not tell me, was that it hurts to lose your hair.

I had not given a lot of thought to how it would physically feel to lose my hair.  I was more focused on the emotional effects of losing my hair.  But, it really hurts.  It is a very weird, tingly feeling and you just know your hair is a goner.  It started coming out when I brushed my hair, but mostly in the shower.  Once it got to that point I would not go out of my house without some type of head covering, I shaved the rest of it off.

As I was now bald, the question became, “Am I a wig person?” The very clear answer to that question was a no.  If I was working at the time, I likely would have chosen to wear my wig more.  However, I was a stay at home mom at the time of diagnosis with 3 boys – 5, 3, and 1.  I had my nice respectable wig, but I am a very no fuss person and putting artificial hair on my head to style was a little too much work for me.  So, I opted for scarves and in particular, buffs.  Buffs are great and very simple.

Having no hair definitely identifies you as someone who is sick.  So, you get a lot of “Oh, how are you doing?”, and “I am so sorry for you” types of inquiries from people you do not know.  While at first, it is a little disconcerting, in the end, I actually think hair loss with cancer is very therapeutic.  It gets your diagnosis out in the open and that actually makes fighting cancer easier.  For me, while cancer is extremely personal, what you learn from cancer is much bigger and includes a lot more people. 

At the end of the day, losing my hair became something that I shared with three of my now very best friends.  Our pictures chronicle our battle with cancer and our subsequent recovery.   Losing my hair may have initially been one of my bigger concerns, but, as it turns out, it really is just hair.