N.S. woman with rare cancer pushed past misdiagnoses to access care
'You have to advocate for yourself,' says Ashley Nightingale
A rare disease and an overloaded health-care system — two things Ashley Nightingale has been forced to navigate over the past six months.
Nightingale, 36, moved home to Nova Scotia in September, less than a month after giving birth to her second child. She'd been living in Mississauga, Ont., for several years, but wanted to spend her maternity leave close to family, and close to the ocean.
She and her husband, Jared, bought a house in Hubbards, on the province's South Shore, with a view of the water and, after some renovations, moved with their two-year-old son and infant daughter into their new home.
Everything seemed to be going perfectly until she found a lump in her right breast.
What followed were several months full of misdiagnoses, trips to the emergency room, ineffective rounds of antibiotics and deepening pain.
Nightingale said it was by dint of her own persistence that she finally got an answer that explained all her symptoms: Stage 3 inflammatory breast cancer, a rare and aggressive form of the disease.
"You have to advocate for yourself," the 36-year-old said.
"If someone says there isn't [anything wrong], and you believe there is, you really need to push and take charge of your own health as a patient."
No family doctor
Nightingale didn't immediately think the lump was a sign of cancer. As a breastfeeding mom, a blocked milk duct seemed a likely culprit.
Even when it didn't go away with home remedies and over-the-counter treatments, Nightingale said she wasn't worried. She figured it was just a stubborn blockage.
She knew she should seek medical advice, but where to go wasn't clear.
Like tens of thousands of other Nova Scotians, Nightingale didn't have a family doctor. She wanted to avoid a walk-in clinic or emergency department, so she brought the issue up at one of her daughter's routine vaccination appointments.
Her daughter's doctor diagnosed Nightingale with mastitis — in other words, breast inflammation, usually caused by an infection. He prescribed antibiotics.
After a few weeks and no improvement, the same doctor referred Nightingale for a mammogram, but mastitis was still the presumed problem.
While she waited for that appointment, two months away, Nightingale said she started to suspect a more serious affliction.
Her breast became so inflamed and painful she said she could hardly stand to wear a shirt. Still, she continued to breastfeed, taking as much Tylenol and Advil as she could to combat the pain.
She made her first trip to the emergency room a few days before Christmas, just as the Omicron wave of COVID-19 was settling in. The visit ended with another prescription for antibiotics.
"The problem was that every day I woke up, it was getting worse and worse … the pain was unbearable," Nightingale said.
By the time she went in for her mammogram appointment, the inflammation was so severe the procedure couldn't be done. Instead, she received an ultrasound, which led to tissue samples being taken for biopsy.
The biopsy results were all clear, which Nightingale found both relieving and perplexing. She needed an answer and a resolution for her symptoms. But she was sent home, again, without either.
It took another trip to the emergency room and another round of antibiotics — this time delivered intravenously — before a doctor told Nightingale they suspected cancer.
It would take another two rounds of "excruciating" biopsy procedures before the diagnosis was confirmed.
Hard to diagnose
Inflammatory breast cancer is often confused with mastitis, according to a statement from the IWK Health Centre, where Nova Scotia's breast health clinic operates. The two illnesses have overlapping symptoms, and mastitis typically has to be ruled out before inflammatory breast cancer can be diagnosed.
The statement also notes that it can be difficult to navigate the health-care system without a primary care provider, for all medical conditions.
Nightingale said she found that challenge to be especially intense because of COVID-19 and the added strain it put on the health-care system.
"The staff is overwhelmed. I think they're overworked, they're exhausted. So it was, you know, challenging trying to get an answer of what is going on," Nightingale said when describing her second visit to the emergency room.
System backlogged
Following her diagnoses, the start of cancer treatment was swift, Nightingale said, but she's still in the early stages.
The exact timeline of treatment is not yet clear, nor is it clear whether she'll be impacted by the backlogs afflicting Nova Scotia's cancer care system.
The pandemic has pulled staff and other resources away from cancer programs, leading to delays in testing, biopsies, screening, diagnostic imaging and surgeries. The senior medical director of cancer care recently told CBC News he expects those impacts will cost lives.
Health Minister Michelle Thompson said she wants people to know her department is working hard to address backlogs and staff shortages in all areas of care.
"We are very, very focused on improving access," Thompson said in a recent interview.
She pointed to the expansion of virtual care, urgent treatment centres and a pilot for offering primary care in pharmacies, which are all programs introduced since the Progressive Conservatives came into power last summer.
"We know the system is stretched and we know we have significant workforce issues," Thompson said. "But that's not an excuse, that's a reason to keep going and keep working harder."
Treatment continues
Nightingale has undergone two rounds of chemotherapy and is scheduled for several more over the next two months. She's expecting a mastectomy and radiation will follow, eventually.
She said she's trying to stay positive, but the uncertainty of her future is nagging.
"Is chemo going to work? Is the mastectomy going to work? Is radiation going to work? How long do I have?"
In the meantime, she said she's trying to enjoy small pleasures, like cooking and, for a brief period, sporting bright pink hair. She dyed her long locks before they started falling out from the chemotherapy.
Above all, she said, she's focusing on her young family.
"Having my two kids … keeps you, obviously, motivated and going."
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