Helping Cancer Patients Keep Their Hair
The statistics are staggering. One out of every eight women in the United States will be diagnosed with breast cancer. In fact, breast cancer is the second most leading cause of cancer death among women. These sobering facts are all according to The National Breast Cancer Foundation.
It seems everyone knows someone afflicted with the disease in some way or another. For me, Linda, my first wife, died of breast cancer 20 years ago this November. Some on the Outer Banks may remember Linda from the Galleon Esplanade in Nags Head. Additionally, both my daughters have also inherited the BRCA-1 gene. The gene is often referred to as the “breast cancer susceptibility gene.” When you go through something like breast cancer, it is very important to maintain some sort of normalcy in your life. This is where Jennifer Schwartzenberg enters the picture.
Jenn is The Outer Banks Hospital’s Director of Community Outreach and Development. She was diagnosed with breast cancer in February, 2017 at just 41 years old.
For Schwartzenberg who describes herself as “active, lover of life, and wearing her heart on her sleeve,” her diagnosis was “surprising, shocking, and devastating.”
“Normalcy was the number one priority on my mind,” says Schwartzenberg. “I had a seven-year-old at home that needed her mother.” And knowing that chemotherapy was in her future, “the biggest thing for me was not having to answer the question from Kaitlyn of why is mommy’s hair falling out?”
Schwartzenberg’s cancer was determined to be genetic. The type that her paternal grandmother had died from at the age of 51. Jenn would be undergoing the same chemotherapy that her grandmother had also endured years ago. The type of chemo that makes a patient lose their hair.
Sitting in a conference room at the Outer Banks Hospital Schwartzenberg told me, “life changed like that (as she snapped her fingers). “I needed to keep as much control over a situation that I really had no control over.”
So Jenn turned to Robin Hearne, a colleague, and the Director of Cancer Services and Chronic Disease Care at the Outer Banks Hospital. Hearne just happened to be doing some research on something that would help keep some normalcy in Schwartzenberg’s life.
Shortly before Jenn’s diagnosis, Robin Hearne had been attending a conference where she heard about cancer hair loss prevention, the scalp cooling therapy treatment. According to Hearne, “scalp cooling has proven to be a way to help ease hair loss.”
The treatment was FDA approved in May of 2017, and the way it works is that the cap cools the scalp making the cells in the hair follicles sluggish. Hearne continues, “the body’s natural reaction to cold is something called vasoconstriction.”
According to the website MedlinePlus.com, vasoconstriction is defined as “the narrowing (constriction) of blood vessels by small muscles in their walls. When blood vessels constrict, blood flow is slowed or blocked.”
“What you have to remember,” says Hearne, “is that chemo is looking for rapidly replicating cells and attacks them. Hair and nails replicate rapidly, but the constriction caused by the cool therapy cap helps “trick” the chemo into leaving them alone.”
Two years ago, there were just two companies manufacturing a cool therapy cap. One of them, PAXMAN, is based in the UK. The mother of the original founder of PAXMAN, had breast cancer and as a result lost all of her hair. The hair loss extremely traumatized her, so the company went to work developing something to help other women with the same circumstance. The family’s business was refrigeration and after some clumsy experiments, they came up with the cool therapy cap.
According to Ms Hearne, the cool therapy cap treatment is a “a standard of cure in Europe.” “PAXMAN has been a great company to work with,” adds Schwartzenberg. “They sent a rep and a medical professional all the way here to the Outer Banks from the UK to train our staff at the hospital on how to use their system.”
The treatment is pretty easy to use. Here’s how Schwartzenberg described her process: “First I would wet my hair and comb it back so it’s as flat as possible. Then I would apply the conditioner that PAXMAN supplied and then would stuff all my hair into the first cap. The first cap is very similar to a swim cap, and is the cap that the hose is connected to that supplies the coolant. Then a second cap is slipped over the first. I call this one the “horse jockey” cap, because of the way it looks. It acts as an insulator to the first.”
There is some time involved in this process, but as Schwartzenberg will be quick to point out, “it is totally worth it.”
The cap is worn for 45 minutes prior to the chemo, to start the constriction process of the hair follicles. It is worn throughout the chemo application, and then for approximately another 45 minutes following the chemo.
The coolant in the first cap is somewhere between 64 to 69 degrees Fahrenheit. It doesn’t seem that cold, but when you figure that the body’s natural temperature is around 30 degrees higher, it is fairly chilly. In fact, some women complain of having an “ice cream” type headache, or what is commonly referred to as a “brain freeze,” while going through the treatment. But Schwartzenberg is quick to point out, “each person’s reaction to the treatment is different. Yes, the first few minutes I would have a headache, but nothing strong enough that I would qualify it as an ice cream headache. I was cold, but the staff just loaded me up with blankets, which made it much better.”
“The thing to remember,” Hearne adds, “is that while you won’t experience hair loss, you will still have some hair thinning.” Schwartzenberg agrees. “I did have some thinning, but again, not enough for my daughter to question it.”
As with anything medical, cost is of a concern. The caps have a cost of approximately $500. Each treatment is about $200 (prices may have fluctuated by release time). If you have 8, 10, or 12 treatments, the cost can add up very quickly. The unfortunate thing is that the insurance companies are slow to react to approve this treatment. Though there is some encouraging news on the horizon. In 2017 Aetna Insurance stated they consider scalp cooling necessary as a means to prevent hair loss during chemo. Patients have claimed successful reimbursement for scalp cooling from Aetna, Blue Cross of California, and United Health Care. Hearne says it’s good that some areas are starting to see some coverage, “but we haven’t seen that here yet.”
Being very cognizant of no insurance coverage and the cost for the treatments, The Outer Banks Hospital Development Council have been using funds they’ve accumulated to offset the cost of this cancer hair loss prevention treatment. “People can apply for these funds, not with the hospital directly, but with the Development Council,” Schwartzenberg adds.
In addition to the cool cap therapy treatment, both Schwartzenberg and Hearne wanted to stress the importance of genetic testing for both the BRCA-1 and BRCA-2 gene. Schwartzenberg had the testing and has since found out, much like my daughters, she inherited the BRCA-1 gene. Those that have had breast cancer in their family’s past are highly encouraged to have the testing done. In fact, according to Hearne, The Outer Banks Hospital has recently earned a $150,000 grant for a quality improvement project to improve BRCA testing.
Curious as to how often the cool scalp treatment machine is used, I asked Hearne. “The machine is used just about daily now. In fact, the one machine can accommodate two people at once. The machine has two separate hoses and two separate dials.”
Hearne also points out that they are now using the machine not only on breast cancer patients, but have also recently started utilizing it for a lung cancer patient. “The treatment, within the last year, has been approved to be used for all solid tumors.”
If you’d like to help, you can. The Outer Banks Hospital has two funds set up. According to Jennifer Schwartzenberg, “Get Pinked! is an initiative raising vital funds that supports programs, treatments, and resources for patients in our community affected by breast cancer. Through Get Pinked! the hospital has provided more than 1,850 screening mammograms for women (and men), regardless of their ability to pay, since 2011. Additionally, funds from Get Pinked! have helped to bring stereotactic breast biopsy equipment to the hospital, as well as purchase an ultrasound machine that detects breast cancer and other cancers.”
There is also a second fund set up called OBX Cancer Cares, which according to Hearne, “funds projects to encompass all different types of cancer.
For that fund and a list of other non-profit organizations, My Outer Banks Home is setting up The Giving Guide on the Outer Banks.
Greg Smrdel, while his physical body lives in Ohio (for now), his soul will always remain on the Outer Banks.