Rachel’s Story – I didn’t want a lot of people to know

Deborah’s Story – I looked in the mirror and saw me

Dawn’s Story – DigniCap helps you feel normal

Christine’s Story – Keeping my hair gave me hope

Angela Farino (UCLA)

I had injured my chest last fall when I was in a car accident, but the last thing in the world I expected was a cancer diagnosis.  The medical staff was examining the area during an ultrasound when they discovered a tiny lump in my breast that turned out to be cancer.  It was definitely divine intervention because being that it was such a small lump, they didn’t know if it would have been detected on a mammogram.

I started a regimen of surgery, radiation and chemotherapy right away.  I wanted to keep my treatment private, but I knew that chemo would cause the telltale sign of hair loss.  I heard that DigniCap had been successfully used on cancer patients in Europe for more than ten years and joined UCLA’s clinical trial at the Jonsson Comprehensive Cancer Center.

During the process, I tolerated the scalp cooling very well, and my body was kept warm with an electric blanket.

Accepting the fact that I was going to lose my hair was very difficult because I felt as if I would be losing part of my identity.  With the DigniCap, it allowed me to have control over something in a process where I really had no control.

— Angela Farino, Irvine, CA

“I think the hardest thing for so many of our patients is losing their hair, because they lose part of their identity. If you can keep your hair, look in the mirror and don’t look sick, it’s very important for feeling better.”

Sara Hurvitz, MD
Director, Breast Cancer Clinical Research Program, UCLA
Co- Director, Santa Monica – UCLA Outpatient Hematology/Oncology Practice
Asst. Professor of Medicine, Division of Hematology/Oncology – David Geffen School of Medicine

Donna Tookes

My hair has always been my “signature” feature, ever since I turned prematurely silver at age 25, so when I was diagnosed with cancer in January 2014 [at age 59], I was devastated.  I knew chemotherapy meant my hair would inevitably fall out.  I walked out of the room when the doctors told me.  I felt dizzy, weak at the knees, because I just envisioned myself very skinny with no hair, going through chemo.

Luckily, my husband put all of his focus into trying to figure out how best to make me as comfortable as possible during those challenging months of treatment, and he found a clinical trial for DigniCap, a scalp-cooling system created by the Swedish firm Dignitana that allows patients to keep their hair while they undergo chemotherapy.  Even though it hadn’t been approved by the FDA yet, he wrote an incredible letter to Mount Sinai Beth Israel Hospital to urge them to accept me into the clinical trial of the system they were conducting there.  He said that the program would “benefit tremendously by selecting this beautiful, mature, youthful-looking woman to be a model.”  How could they resist?   His passionate, heartfelt letter got me accepted into the trial.

With the use of the cap, I was able to keep all of my hair and could choose to stay more private about my battle with cancer.  I didn’t have to walk into the grocery store and have to explain what I was going through to the same people who had complimented me on my beautiful hair for so many years.  I still looked like myself, even though I was going through life-saving treatment.  For some women, losing their hair is a badge of courage, but for me it was a very big issue.  I’m so grateful to my husband for discovering DigniCap and for getting me into that trial.

— Donna Tookes, Stamford, CT

“A small number of women embrace the hair loss as, you know, a sort of badge of courage.  But I have to say, for the majority of women, this is a very, very big issue.”

Hope S. Rugo, MD
Clinical Professor, Department of Medicine – Hematology/Oncology, UCSF
Director of Breast Oncology and Clinical Trials Education at UCSF
[Principal Investigator for the Dignicap study, which included more than 100 patients]

Carolyn Dempsey

I was very fortunate to find out about the clinical trial for DigniCap in time.  When I was first diagnosed with breast cancer [in May 2013], of course I first thought, “Will I live? Will I get to see my children grow up?” but then I worried that being bald would frighten my kids.  They’re young – they were 12, 9 and 6 at the time – and I could only imagine how they’d react to seeing mommy without her ponytail.

I was prepared to face the physical and psychological assault of chemotherapy, along with the nausea and fatigue, but I didn’t want my family feeling sorry for me or constantly worrying every time they looked at me.  I confided in a friend about what I was going through, and she mentioned that she’d read something about a little-known scalp-cooling technique they were using in Europe that had been shown to prevent chemo-induced hair loss for patients with early-stage breast cancer.

I started looking into it and found out that it wasn’t available in the United States yet.  I was resigned to the reality that I would lose my hair during chemotherapy, but my husband encouraged me to pursue preserving my hair.  Eventually I found my way to the Weill Cornell Breast Center at New York-Presbyterian Hospital, where they were doing a research trial on DigniCap.  I got into the trial, and the system was everything the people in Europe said it was.  I only lost a minimal amount of hair.  Even I could barely tell I’d lost any hair at all.

Not having that reminder every time you look in the mirror that you are sick, and you look normal to your friends and family, made the chemo much more bearable.  Instead of illness, I saw myself.  Many people had no idea I had cancer.

— Carolyn Dempsey, New York, NY

“Cold-cap therapy is empowering. It allows women to maintain their self-esteem and sense of well-being, as well as to protect their privacy. Without these caps, 100% of the women lose their hair by the second treatment.”

Tessa Cigler, MD, MPH
Weill Cornell Breast Center
New York-Presbyterian Hospital

“For those of us who have been giving chemo for so long, to see that finally there is something to provide confidence to patients is exciting. When you can offer this, the world changes. You see it in our patients’ whole outlook as they deal with cancer.”

Marta Vallee-Cobham, RN
Clinical Research Nurse
Weill Cornell Breast Center at New York-Presbyterian Hospital

Deborah Cohan

I was diagnosed with breast cancer in September 2013. I was thrilled to have the opportunity to participate in a clinical trial at the University of California-San Francisco for DigniCap, an experimental treatment that cools the head during chemotherapy to reduce hair loss. The idea behind the “cold cap” is relatively simple and it wasn’t uncomfortable. I looked like Amelia Earhart on a spa day! I had no side effects and retained most of my hair. I never needed a wig during treatment and even went on national TV 3 weeks after my final round of chemo.

It was a powerful experience to look healthy throughout chemotherapy and be treated as a healthy person by others. Those who knew I was undergoing chemotherapy were perplexed at how vibrant I appeared and that influenced how they treated me. That, in turn, influenced how I identified as someone who was healing instead of someone who was sick. Having hair also allowed my children (then 9 and 6) to see me as just their mommy, not a sick woman.

The DigniCap has been available in Sweden since the mid-1990s and is being used throughout the world, except the U.S., where it has not been approved yet.   I firmly believe in equitable access to medical treatment, and FDA approval of the DigniCap is important because then it can be more widely available to patients like me.

— Deborah Cohan, M.D., San Francisco, CA

“The loss of hair that comes as a side effect of many chemotherapy agents can be a devastating part of cancer treatment.  Some patients see it as not just a blow to their vanity but as a constant, visual reminder of their illness.  It’s often the most devastating aspect of treatment.”

Hope S. Rugo, MD
Clinical Professor, Department of Medicine – Hematology/Oncology, UCSF
Director of Breast Oncology and Clinical Trials Education at UCSF
[Principal Investigator for the Dignicap study, which included more than 100 patients]

Heather Millar

It’s strange to think that I was one of the first women able to save their hair during chemotherapy, as a UCSF patient participating in the Dignicap feasibility study in 2010. What’s strange is that it’s taken so long for this to become available.

Some people seem to think that the hair loss of cancer treatment is trivial, that it’s just something to be got through, that it’s not important.  But the more I think of the cancer patients whom I know here in the United States and those millions whom I don’t know here and abroad, the more I think that we’re not so different.

It’s not the hair that’s important; it’s that losing your hair sets the mark of death upon you.  It brands you with this big sign that says, in all caps, ‘CANCER PATIENT.”  Whether or not you end up dying of your cancer, losing your hair makes you scary to other people.  It creates a barrier.  It makes people stare.  It makes people say silly things.

These days, in the developed world, we don’t see many obviously ill walking around on the street.  Heart disease and diabetes are two of the biggest killers, but you can’t tell if someone has those diseases when you look at them.  The most obvious sign of illness in a world that has eradicated scourges like smallpox and polio is the unnatural baldness brought on by chemotherapy.

The desire to keep your hair during chemo is not about vanity.  It’s about not wanting to create yet another barrier between yourself and the rest of humanity.  The desire to belong is so strong that many women will make medical decisions based on the desire to keep their hair.  My oncologist, Dr. Hope Rugo, says that she often has patients who resist chemo because of the hair loss.  I don’t know for sure, but I would guess that some may die as a result of not doing chemo.

The DigniCap may not be able to help those women, but I sure hope the cold cap goes on to become the standard of cancer care.  People shouldn’t die because they’re afraid of being bald.

— Heather Millar, San Francisco, CA

“The desire to belong is so strong that many women will make medical decisions based on the desire to keep their hair. I’ve often had patients who resist chemo because of the hair loss.”

Hope S. Rugo, MD
Clinical Professor, Department of Medicine – Hematology/Oncology, UCSF
Director of Breast Oncology and Clinical Trials Education at UCSF

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