Cancer Patient stories PYNK Sunnybrook Magazine – Fall 2016 Women's health

Breast cancer program supports young women through the ‘complicated issues’

Sonia Rocco, pictured with daughter Genna

Sonia Racco, pictured above with daughter Genna, is a breast cancer survivor.  Five years after her lumpectomy, radiation and chemotherapy, she gave birth to her second child.  (Photography by Tim Fraser)

Young women with breast cancer face medical and psychological challenges that can be very different to those of their older peers.

That’s why Sunnybrook launched the PYNK program.

Sonia Racco was 35 when she gave birth to her first child, a healthy baby girl named Genna.

Twenty months later, Sonia was diagnosed with breast cancer.

“I found the lump while I was breastfeeding,” says Sonia, “but I didn’t think it was anything.”

She knew that it was normal for breast tissue to change with pregnancy and breastfeeding. She also knew there was no history of breast cancer in her family, nothing to suggest that she might be one of the thousand or so Canadian women under the age of 40 who are diagnosed with breast cancer every year.

When the lump didn’t go away after a couple of weeks, Sonia went to her family doctor. Her mammogram was worrisome enough for a referral to Sunnybrook’s rapid diagnostic clinic.

“I had the mammogram, the biopsy and the diagnosis within 24 hours,” she recalls. “I kind of knew as soon as they did the biopsy on my breast and under my arm. My husband was a lot more overwhelmed than I was when we got the results,” says Sonia.

“But later, when I got home and I was with my 20-month old calling me mommy, I was completely overwhelmed. There were a lot of very scary moments: ‘What is happening to me? What’s the prognosis?’ All the uncertainty.”

But there was also the Young Women With Breast Cancer (PYNK) Program, Sunnybrook’s support and research program for young breast cancer patients.

Because Sonia was under 40, she immediately qualified for the special care provided by PYNK.

Sonia Rocco, breast cancer survivor, pictured with daughter Genna

Sonia Racco, pictured with daughter Genna. (Photography by Tim Fraser)

It’s a fact that women diagnosed with breast cancer at a young age have lower survival rates and experience poorer quality of life than women diagnosed when they are older. They experience more physical side effects, depression and fear of the cancer returning.

They often sense that they may be facing mortality early, leading to the worst fear of all for any young parent – not being there to see their children grow up. And if they survive, they’ll be dealing with possible premature menopause and infertility related to treatment.

“We’re taking away their hormones and destroying their libido,” says Dr. Ellen Warner, referring to some of the lesser known side effects of cancer treatment. She had these concerns in mind when she initiated PYNK, a groundbreaking team effort to deal with the complicated issues, including infertility, of young women diagnosed with breast cancer.

“We have a nurse navigator*,” she says. “Our women are getting extra nursing care, but a lot of it is also psychological.”

She cites an example: “We had one young woman who was newly married. Sex became very painful and she would bleed. She was dealing with physical symptoms and psychological stress.”

The critical issue for a high percentage of these young women − after survival − is fertility

The young patient, sent into early menopause by the cancer treatment, was experiencing vaginal dryness. Fortunately, there was a simple solution, says Dr. Warner. “She wasn’t using lubricants properly. We also have a counselling program online for these young couples.”

PYNK patients range in age from 17 to 40 years old, with an average age of 35. However, the average woman who gets breast cancer is 61, notes Dr. Warner. For those older women, a breast cancer diagnosis brings with it many questions and concerns.

“But for a younger woman, the questions and concerns can be different. Maybe she’s 30 and single, and she’s thinking, ‘Oh my God. I’m going to lose a breast, never get married, go into menopause, never have a baby.’ Or maybe she has young children, a big mortgage, has to quit work and hire babysitters for appointment and treatment days. Maybe she wanted to have another child.”

The critical issue for a high percentage of these young women − after survival − is fertility. Endocrinologist and infertility specialist Dr. Karen Glass has been part of Dr. Warner’s PYNK team from the beginning, harvesting eggs before chemotherapy, offering in vitro fertilization (IVF) and freezing the fertilized or unfertilized eggs for later implantation.

“For young women with cancer,” says Dr. Glass, “it’s now the completely normal, expected thing to do.”

A focus on breast cancer research

Research has always been a major focus of PYNK. Studies have looked at the uptake of genetic testing among women born outside Canada, what percentage of women wanted prophylactic mastectomies and the relationship between young patients with breast cancer and their mothers.

Sunnybrook’s successful PYNK program is the prototype for a new Canada-wide research project called RUBY (Reducing the Burden of Breast Cancer in Young Women).

Co-sponsored by the Canadian Breast Cancer Foundation and Canadian Institute for Health Research, the four-year study will enroll 1,200 women newly diagnosed with breast cancer at age 40 or younger – including PYNK participants – at 29 sites across Canada.

RUBY will build on the PYNK research model developed at Sunnybrook, collecting blood and tumour samples in addition to detailed clinical data and patient-reported outcomes, which are kept in a special PYNK database. The data collected will include detailed information about their family history and other risk factors, treatment, disease outcome and quality of life.

Dr. Karen Glass

Dr. Karen Glass advises PYNK program patients of their fertility options, such as freezing eggs, before they go through chemotherapy. (Photography by Doug Nicholson)

“Some of it is hereditary,” says Dr. Warner, “but we don’t really know what causes it (at a young age). It’s all part of the research challenge.” She calls RUBY a “PYNK copycat” on a larger scale.

RUBY encompasses several substudies, including genetic testing for abnormalities that may have caused the cancer, and determining the effect of lifestyle factors on breast cancer recurrence.

Dr. Warner and Dr. Glass are guiding research within RUBY that is intended to encourage referrals of young women with breast cancer by breast surgeons to fertility specialists who specialize in this patient population. They are also working on a study to better predict the effects of cancer treatment on fertility.

“Ultimately, we’re hoping that the research will come up with better treatment, that recurrence rates will drop, and that quality of life will be better for young women with breast cancer,” says Dr. Warner.

While Dr. Warner’s and Dr. Glass’s research is helping create a better future for young women with breast cancer, there’s much joy every time a young breast cancer survivor is able to bring new life into the world because of the PYNK program.

“I just found out today that another PYNK graduate is pregnant,” Dr. Glass says, with a touch of pride.

Five years after her lumpectomy, radiation and chemotherapy, Sonia is now celebrating another milestone; she gave birth to her second daughter, Gia, in July, making her six-year-old Genna a big sister.

“Dr. Glass is incredible,” Sonia says. “One of the first conversations I had after the diagnosis was, ‘Do you want to extend your family?’ She took me through the procedure and was with me every step. It was a comforting experience, how she and Dr. Warner worked together.

“My husband and I decided to freeze embryos. And last winter, we decided, let’s give it a shot. And it took. And everything is going great,” she says. “Having a second child was a hope. A hope of a possibility.”

*In 2023, PYNK changed models from Nurse Navigator to Physician Assistant as the lynchpin of the PYNK program.

About the author

Judith Gerstel