Stephanie Gilman was 28 when she felt a lump in her breast.
It was September 2012 – Gilman felt pain, didn’t think much of it but decided she’d check it out with her doctor just in case.
Cancer wasn’t on Gilman’s radar – she guessed it might be a cyst or some discomfort. But that visit turned into a referral to a specialist for an ultrasound, a biopsy and ultimately, a diagnosis: the healthy young woman had Stage 1, HER2-positive breast cancer.
“The second they thought the ultrasound looked weird, I knew something was wrong. I was in disbelief, shock, I don’t think it hit me right away,” Gilman told Global News.
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Canadians may not think that young women would encounter breast cancer, but 23 per cent of patients are women under 50 years old.
On Monday, national organization Rethink Breast Cancer launched new care guidelines that outline what young women with breast cancer and frontline health care workers need to consider in treatment and care for this group.
MJ DeCoteau, founder and director of the 14-year-old organization, says that the guidelines fill in a gap in cancer care in Canada. There’s plenty of information for cancer patients, young and old, but there is a lack of information for this specific group, she suggests.
When Gilman was diagnosed, for example, she received generic advice on breast cancer, but there wasn’t information that matched her circumstances as a young woman with the disease.
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DeCoteau lost her grandmother and mother to breast cancer – when she was in university hoping to learn more about breast cancer risk at a young age, the material she was handed often catered to women in later stages of life.
“It’s that combination of the aggressiveness of the disease and the life stage they’re at that makes for very specific challenges,” she said.
Rethink Breast Cancer is Canada’s sole national breast cancer charity that’s dedicated to young women – in educating this group about the disease and helping women battling it. The guidelines came out of a national survey that polled young women with breast cancer.
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DeCoteau’s team learned that young patients were “falling through the cracks.” Some young women received care that identified their individual needs, such as fertility issues during and after cancer treatment or relationship issues they may encounter, but others didn’t.
“It’s about calling for consistent care for all young women…for a physician this might be their first time seeing a young woman with breast cancer and might not be familiar with unique needs. These guidelines would address those gaps,” she said.
The guidelines encourage doctors to talk about and for patients to ask about: the risk of menstrual irregularity and early menopause, impact on sexual health, body weight and image, and even the potential for fertility issues.
In Gilman’s case, she underwent a bilateral mastectomy, which is when both breasts are removed. She did six rounds of chemotherapy followed by radiation and a year of potent cancer drugs.
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Gilman says her situation wasn’t as difficult because she is married, but she concedes that it’d be tricky for her peers who are still navigating relationships and establishing stability.
“When you’ve had a mastectomy it’s hard to explain to somebody. It’s hard getting out there when you have those insecurities a lot of people won’t understand and finding other women to connect to. It can be extremely isolating,” she said.
She’ll be on hormone therapy for the next decade, but her outlook is very promising: there’s no evidence of the cancer, and doctors don’t anticipate the disease coming back.
DeCoteau was joined by St. Michael’s Hospital doctors and cancer patients at the guideline’s Monday launch. She said that so far, doctors have been responsive to the guidelines.
Ideally, they’d be on hand at hospitals, cancer centres and support centres across the country.
Read the full guidelines here.