Madison breast cancer survivor helps
those with similar journeys
By ALIX BOYLE / Photography by Amy Etra
Roberta Lombardi sits at the kitchen counter of her immaculate house in Madison, drinking coffee from a fine china cup, tapping out social media posts on her laptop. Dressed casually in jeans and slippers, she’s also wearing a delicate infinity necklace. A breast cancer survivor, Lombardi is a force of nature who has devoted herself to making life better for other survivors.
The infinity necklace relates to two organizations she founded.
Infinite Strength is a nonprofit that assists breast cancer patients by paying for medical treatments not covered by insurance – and other costs related to treatment like parking, travel, and high-quality wigs and mastectomy bras. It also covers basics like food and rent for women who can’t work while in treatment.
Infinite Beauty is a company that makes bras for survivors, including a bra for women who have had reconstruction surgery after breast cancer.
“After 14 months of treatment, I asked myself, ‘Where do I belong?’ Everything is different,” Lombardi says. “Helping women have a better experience helped me feel better. It gave me a purpose.”
Lombardi was diagnosed in September 2016 with what’s known as HER2-positive (or human epidermal growth factor receptor 2 positive) breast cancer. After a double mastectomy in October 2016, she underwent chemotherapy, chemo-related treatments, and reconstructive surgeries. Despite the ordeal of breast cancer, Lombardi says she feels incredibly fortunate that she did not have to work during treatments and that her husband could help take care of their daughters during that time.
She also was fortunate in that she could afford treatments not covered by insurance and never worried about how to pay for parking at the hospital or meet basic needs like food and mortgage.
Wanting to give back to Smilow Cancer Hospital at Yale-New Haven Health, Lombardi in February 2018 founded Infinite Strength, a nonprofit that raises funds to support survivors. She put her event planner skills to work and created the fundraising gala “An Evening in Pink” in May 2018 and raised $50,000. The 2019 gala raised even more.
“Roberta is an amazing and generous woman,” says Dr. Sarah Mougalian, an oncologist at Smilow, who treated Lombardi. “She has taken her own personal experience – what many would consider a nightmare – and used it to her advantage and the advantage of the entire breast cancer community. She initially thought she just wanted to hold a fundraiser for women with breast cancer, and with Infinite Strength, it has turned into so much more. She really has made advocacy for women with breast cancer her mission in life, and it’s incredibly inspiring.”
Many patients who are diagnosed with breast cancer undergo chemotherapy, putting toxic drugs into their bodies to fight the disease. At the same time, their pocketbooks take a hit.
Unanticipated costs can run the gamut from actually paying for part of the cancer treatment, to transportation, to finding someone to care for children or elders, all while taking time off from work in order to receive their treatment.
Infinite Strength donates money to hospitals, which in turn make grants to patients. Currently, the patient applies for help through the social worker and nurse navigator at the hospital where she is being treated and the hospital takes the money from the Infinite Strength account. In the future, Lombardi wants to fund patients more directly.
Lombardi battled the physical and emotional aspects of cancer, including losing her long, thick, black hair, eyebrows and eyelashes. She remembers always covering her bald head with a hat or wig so that she wouldn’t upset her three daughters.
“Losing your hair isn’t about vanity. It affects the way you see yourself and messes with you mentally,” Lombardi says. “Your self-esteem tanks.”
While undergoing treatment, Lombardi met other women who felt the same way. Preserving hair preserves dignity, privacy, and some semblance of control. It helps patients to move forward and work on healing, and worry less about how they look.
Back when Lombardi was diagnosed, scalp cooling – a technology that can preserve much of the hair for patients undergoing chemotherapy – was not available in New Haven. In 2017, the Paxman Scalp Cooling System received U.S. Food and Drug Administration approval, and since that time, centers around the country, including Smilow Cancer Hospital, have made the treatment available.
Cooling the head before, during and after chemotherapy has been shown to prevent hair from falling out. A 2018 study in Germany showed that 71 percent of women who used the Paxman cooling cap while being treated with anthracycline/taxane-based chemotherapy preserved 30 to 50 percent of their hair – enough hair to forgo wearing a wig or a hat.
Chemotherapy works by targeting rapidly dividing cells in the body. Hair cells divide quickly, which is why chemo drugs cause hair loss. With the Paxman and other scalp cooling technologies, patients don a tight-fitting silicone cap containing a cooling agent that reduces the temperature of the scalp by a couple of degrees. The cold reduces blood flow to the scalp so that less of the chemotherapy drug reaches the hair follicles. Scalp cooling adds about an hour of time in the treatment chair before chemo begins and an hour afterward. Some patients find it uncomfortable, but most tolerate it well.
“Unfortunately, insurance companies are not routinely covering this,” says Paxman’s CEO, Richard Paxman. “Roberta has helped patients who can’t afford scalp cooling, and Paxman discounts the treatment. This allows more patients to get more access. Roberta is building awareness and educating health systems. She’s a fabulous lady, just a great advocate, really.”
Paxman, based in the United Kingdom, has been offering this treatment for 20 years and nearly 98 percent of patients in the U.K. receive scalp cooling along with chemo, all covered under the National Health Service.
The Paxman family’s cooling expertise dates back to a beer cooling system for breweries the family pioneered in England in the 1950s. In the 1990s, Richard Paxman’s mother became ill with breast cancer and tried an early version of the cooling cap that didn’t work. Glenn Paxman, Richard’s father, recognizing how traumatizing hair loss is, developed a better system using the family’s expertise in cooling technology.
Lombardi also is working with Congresswoman Rosa DeLauro to support legislation that would mandate that scalp cooling be covered by insurance.
Many young women are diagnosed with breast cancer in the prime of their childbearing years, and many of these women have cancers that require chemotherapy, usually for three to six months, and/or endocrine therapy, usually for five years or even longer, Mougalian says.
Becoming pregnant during these treatments is dangerous to a developing fetus and, with certain treatments, may not be possible. The older a woman is, the harder it can become to conceive a child; therefore, fertility preservation prior to the initiation of treatment can make having a biological child in the future more likely.
Patients with a breast cancer diagnosis can opt to freeze their eggs or freeze embryos before starting treatment so that they can have children after their treatment, says Dr. Pasquale Patrizio, a fertility specialist at Yale School of Medicine. It can cost $8,000 or more for one cycle of the process, including monitoring, egg harvesting, making embryos, blood tests, ultrasounds, egg retrieval and more.
Even though Connecticut was the first state to mandate insurance coverage for fertility preservation, there are some patients who still cannot afford it, Patrizio says. Infinite Strength has donated money to Smilow to assist patients with fertility preservation.
“This shows how important it is to have collaboration with patient advocacy groups to help protect every man and woman so they won’t have the double whammy of cancer and that they cannot freeze their future,” Patrizio says.
Lombardi was invited to speak about the importance of funding at the International Society for Fertility Preservation conference in New York.
Warming Bra for Cancer Patients
When Lombardi had her reconstructive surgery with silicone implants, she couldn’t understand why she felt freezing cold and why she’d experience chest spasms. Her breasts were cold to the touch and she felt like the implant was coming loose.
The cold is an unwelcome side-effect of reconstruction surgery, which leaves patients with very little fat or muscle tissue covering the implants, Lombardi explains.
Lombardi couldn’t find a bra that kept her warm, so she made one. The bra from Infinite Beauty is now on the market, selling for $82. Called the Felicia, after her grandmother, the bra is lined with a thin layer of neoprene, the material that’s used for wet suits. The bra keeps the wearer just the right amount of warm and supports the implants, which can feel quite heavy. The soft cups are covered in lace.
After a year of trial and error, and experimenting to find the right thickness of neoprene, the Felicia is warming, slightly compressing and beautiful to wear.
Her mechanical engineer nephew, Eric Conti, who once worked as a product engineer of armor for military helicopters, designed the bra with Lombardi. Austin Miller, another nephew with a marketing background, developed the website and its ecommerce feature. The Felicia and other styles are available online and at Lulu’s lingerie shop in Guilford.
In a short time, Lombardi has founded a nonprofit, brought a bra to market, advocated for patients, and raised funds. Now, Middlesex Health is interested in scalp cooling and Norwalk Hospital wants her to start a fertility preservation fund.
It feels like she’s just getting started.