Program offers lifeline to young women with breast cancer

TORONTO—Some are young mothers in their 30s, others 20-somethings starting their first jobs, and on rare occasions they are even teenage girls just finishing high school.
At an age when most of their peers are establishing intimate relationships or starting families, these young women are facing a demon they hadn’t expected to worry about for many, many years.

Breast cancer.
Two words that would strike fear in a woman of any age, but for those 40 and under, the diagnosis can be especially devastating.
“The biology of their disease is different than that of older women,” said Dr. Ellen Warner, a medical oncologist at Toronto’s Sunnybrook Health Sciences Centre who has begun a program for young women with breast cancer, called PYNK.
“Their cancers tend to be bigger, more advanced, higher stage, and . . . are more likely to relapse, either in the breast if they’ve had breast conservation, or in distant organs,” she noted.
“And these women are more likely to die of their disease.”
Warner said women 40 and under, who account for about five percent of the roughly 22,000 cases diagnosed each year in Canada, also have to contend with a host of issues that may not apply to women of a more mature age.
“There are all the psycho-social issues these women have to deal with . . . such as dating or early relationships or new marriages, little kids, being in school, or just starting careers and trying to build them up.”
There also is the social isolation from being the only one among their peers who isn’t perfectly healthy, she said, and having “to deal with menopause symptoms [from chemotherapy] when you’re 30, when no one else around you knows what menopause is, other than their grandma.”
PYNK is named for the colour of breast cancer advocacy, but with the Y referring to “young.” Sunnybrook says it is the first program of its kind in Canada, designed to help young women navigate the medical system and to provide all manner of psychological and social support.
It also has a strong research component, aimed at determining why their cancers tend to be deadlier and to develop treatments to alter that outcome.
Crystal Kramer, 34, is all too aware that when it comes to breast cancer, being young is no advantage.
The Toronto casting director was still breastfeeding her daughter, Lena, when she discovered a lump in one breast last spring. Though small in size, the tumour was “very aggressive,” she said.
Kramer, who had tested positive for the BRCA1 gene that predisposes a woman to the disease, had both breasts removed, along with more than 30 lymph nodes under her arm and up the side of her neck—most of which showed signs of cancer.
She and her husband had planned to have more children, so she began setting up the process to have her eggs extracted, fertilized, and the subsequent embryos frozen.
“But then I got my pathology back and because my cancer was so aggressive, we just decided to go straight into chemo and gave up on the whole fertility aspect,” said Kramer.
“Because there’s no point in trying to have another baby if I’m not even here.”
Kramer knows that if her cancer recurs, it likely would be fatal. But she is refusing to give into doom and gloom, and is tenaciously positive.
“You have to be,” she stressed. “Obviously you have moments when you don’t, but I just told myself you have to be here. I have a child. I don’t have a choice.”
Warner said that like Kramer, the biggest fear young mothers with breast cancer have is not being there to raise their children.
For “Carey,” who asked that her real name not be used, finding out she had breast cancer in her late 30s, not long after giving birth to her second child, was devastating.
“I knew very little about breast cancer. . . . I had no family history of breast cancer or any cancer,” said Carey, explaining she had discovered a lump a few months after stopping breastfeeding and going back to work.
“You think about breast cancer when you get into your late 40s and early 50s, not in your 30s after having a baby.”
She was referred to Warner and the PYNK program after having her lump removed at another hospital. It was a step that became a turning point in a bewildering and demoralizing journey she never wanted to take.
“I just remember meeting her and the entire team. Everyone was so nice and so compassionate.”
Carey said Warner sat her down and “asked me to tell her about myself before cancer. And even though it had only been about eight weeks since the diagnosis, it was hard for me to recall who I was. It takes over, it consumes your life, every aspect of your life and your family’s life.
“I started by saying that for a mother, a new mother, it’s very hard for me to think of not being here for my children,” she recalled, her voice breaking with emotion. “And I said to her that I feel as a mother, my job is to be here to ensure I watch them grow up.
“And she stopped me and she said that her job was to ensure that I was here to watch my grandchildren grow up.
“It was the first time that I had hope that I was actually going to live.”
PYNK centres around the nurse co-ordinator, who sets up and guides patients through their myriad tests, consultations with specialists, and treatment schedule, as well as supplying referrals for peer support and other psychosocial services.
For Carey and Kramer, the program was a lifeline that helped them from slipping under the waves of despair.
“It kind of feels like someone’s holding your hand your whole way through your cancer treatment because you don’t know where to go,” said Kramer, whose hair is just starting to grow back after months of chemo.
“I think it’s a very important program and I couldn’t imagine having gone through this year without it.”