Comments on comments

So far, 91 people have weighed in with their opinions about the cold cap story that went live on MSNBC Monday. The story led with the clinical trial in which I’m participating, the one that uses a supercooled cap to help me keep my hair during chemotherapy. The comments following the MSNBC story fall into a few categories:

1) This story reminds me of a personal experience that was a) good or b) bad. If a), I’m thrilled; and if b), I’m upset about the idea that a cold cap can preserve hair during chemotherapy.

2) I had chemotherapy and I lost my hair and it was fine. Buy a wig. Wear a scarf.

3) It’s stupid to try to save your hair if you risk a future recurrence of the cancer. Is saving your hair worth losing your life? Can’t cooling your scalp increase the risk of a brain metastases?

4) This is totally great. I would love to try the cold cap for myself/my sister/my mother/my friend. Hurry up, FDA.

I won’t try to address the first group. Over the years, I’ve learned that it’s fairly futile to argue with someone who has a passionate opinion based on personal experience.

As for the joys of wigs and scarrves, I’m happy if that works for some women. For all breast cancer patients, this is an experience that turns you into a warrior. I know and respect several women for whom losing their hair was a turning point that made them stand up and roar in determination. I applaud them. But I know many other women for whom the hair loss is a devastating blow. Breast cancer takes so much from you, It trashes the sense of invincibility that helps us move through our lives. It hampers your ability to make a living as you once did. It can take one or both of your breasts. It can take your ability to have children. It messes with your sense of yourself as a woman. It complicates your sexuality. After all this, many women feel, losing hair is just the final straw. I am one of this latter group.

Hair is not trivial. It is central to one’s appearance. This is not vanity; it is just reality. If you see a bald woman on the street, you do a double take. You’re lying if you say you don’t. Why lose your hair if you don’t have to do so? Why add the extra stress of that “badge of cancer” that so freaks the man on the street? If I had had to lose my locks, I would have dealt with it. I really would have liked to try henna designs on my scalp. But I’m tremendously glad that I can save the henna for another day.

But what about the risks? Some commenters mentioned the possibility of brain metastases. To them, I would point out that the blood/brain barrier is not in your scalp. The cancer cells need to get through the blood/brain barrier to set up shop in your brain. The cold cap does not supercool your whole head – what a terrifying thought – it just cools your scalp.

There’s a history to this fear of brain cancers: One of the first chemotherapy studies, beautifully described in Siddhartha Mukherjee’s book, The Emperor of All Maladies, was done on leukemia patients. They all went into remission for several months, only to relapse with devastating and mostly fatal brain cancers. But this was more than 40 years ago! It was before combination chemotherapy, using several drugs to fight the cancer, was standard. It was before advanced imaging technologies made it possible to monitor patients and identify cancers at a very early stage.

The most common metastasis in breast cancer is breast to bone. Breast to scalp metastasis is incredibly rare, according to my oncologist Dr. Hope Rugo, who is a world-renowned researcher and clinician. And they’re going to watch those of us in this trial. And I assume that doctors carefully watch the scalps of women who use the Penguin Cap, the dry ice system that is already available for women who are willing to pay for it.

So I throw in my lot with the last group of commenters: The DigniCap is what Martha Stewart would call a “good thing” I’m writing this with my hair tied up in a bandana. It’s good to have it there, not because I’m too vain to live without it but because it’s nice to have one shred of normality as I face another chemotherapy infusion next week.

Come on FDA. Please allow a larger trial so that this system which has been used for years overseas can be available in the United States.