This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Chemo and Hair Loss Is More Than a Vanity Issue

June 1, 2017

by Sue Friedman

I was happy to read the XRAYS report on research about scalp cooling to prevent hair loss during chemotherapy. Chemo-related hair loss is more than merely an inconvenience during cancer treatment. My own experience as a young breast cancer survivor on chemotherapy convinced me of this.

photo of me bald in camouflage

Sporting my new look, I bought some camouflage and prepared myself to battle breast cancer.

I was 33 when I was diagnosed with early-stage breast cancer. At the time, my primary concern was choosing a treatment that gave me the best chance of surviving to raise my 2-year-old son. I had additional concerns about treatment side effects, such as nausea, fatigue and low blood counts, all of which affected my ability to tolerate treatment. And as a young mother, it was important for me to have enough energy to parent my young son and to try to give him as normal a childhood as possible.

To avoid clumps of hair in the sink, a thinning hairline, and the accompanying sickly look, I took matters into my own hands and visited the hospital salon for a pre-emptive head shave before starting treatment. It was simultaneously terrifying—symbolic of my upcoming chemotherapy—and freeing—restoring a semblance of control over one aspect of my treatment. Sporting my new look, I bought some camouflage t-shirts and prepared myself to battle breast cancer.

Despite my efforts to project a positive image, venturing hairless out in public left me vulnerable, and people often felt free to offer commentary, telling me why they thought I got cancer, offer wild advice about some new “miracle cure” that didn’t make hair fall out, or detailing friends’ or relatives’ cancer treatment horror stories. Too many everyday trips to the park or the playground ended up being yet another stigmatizing reminder of my diagnosis and treatment. Had it been available back then, I might have jumped on the opportunity to avoid chemotherapy-induced hair loss.

Me with my son, Beau sporting a scarf

Trips to the park ended up being a reminder of my diagnosis. Had it been available, I might have jumped on the chance to avoid hair loss.

Many patients express deep fear of chemotherapy. I can relate. Cancer can be all-consuming, and any reprieve from side effects is welcome. Some patients choose to forego chemotherapy to avoid side effects; so research on methods to minimize the side effects of treatment can be lifesaving.

XRAYS reviewed research on a scalp-cooling devices to prevent hair loss due to chemotherapy. This is exactly the type of product I might have invested in during my own treatment. I had limited resources, and although I avidly read every media article about breast cancer that I could get my hands on, I didn’t always have access to the journal article or the full story. The XRAYS report has balanced information, including the limitations of the research study, information that most of the media reports glossed over. For example, this research didn’t include women who received the same type of chemotherapy that I had. A report like this can help women in treatment to weigh their options. This is particularly important for those who, like me, experienced medical debt from treatment, and for whom the additional cost of this intervention would not be covered by insurance.

This is the goal of XRAYS: to help people make use of reports on cancer in the media so that they can make informed and shared decisions with their health care team.

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One Comment

  1. Louise Barnett says:

    Hi Sue,

    I used Peniguin cold caps this year and I want to try to get insurance companies to cover it or at least help out in the costs. It helped me tremendously knowing that I was working hard to save my hair so I wouldn’t stand out as another cancer patient. I have appealed twice to Anatheim Blue Cross and have been denied. They say I have no more appealls left. They wouldnt even offer me the $1,500 that they allow for a wig. I spent $4,000 in five months to save my hair. Can FORCE help me
    help me change this?

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