Donna Gerardi says her 28-year-old son fell through the cracks of the healthcare system when his cancer diagnosis went undetected for months and progressed to a late stage.
At the end of last year, Gerardi said her son was referred to a specialist with a number of symptoms, including lower abdominal pain. Gerardi did not want to disclose his original diagnosis but said he was given antibiotics.
The specialist said surgery was a likely next step.
At that time, there was no talk of cancer, Gerardi said.
While taking the antibiotics, he began to feel a little better, but it didn't last long.
By then, the pandemic was in full swing and Gerardi's son welcomed a baby, so he attributed his fatigue and body pains to having a newborn.
He was also having a difficult time trying to see his family doctor and his specialist with all the restrictions, Gerardi said.
Throughout the summer he had two phone consultations with the specialist, whose office was not open to in-person visits.
She says despite the pain he was feeling, he didn't go the emergency room because he believed he had received his diagnosis and was waiting for surgery.
But by August, Gerardi said she instantly knew he needed immediate attention.
"I looked at him, I said to him, 'you have to go back to your family doctor. You have to go see somebody. You're getting worse, something is seriously wrong," she said. "At the beginning when he couldn't see his doctor, I actually said ... 'okay, I don't understand this. Why can't you see doctors? What happens to these patients who are really sick right now and may have even cancer?"
As it turned out, he was really sick — when he finally saw his primary care doctor in September and got an ultrasound, he was diagnosed with stage 3 germ cell cancer.
Four tumours were located throughout his body.
Though he experienced symptoms back in December 2019, he wasn't diagnosed until late September.
Gerardi said her son is focusing on his recovery — he is being treated by Windsor Regional Hospital's cancer centre — and did not want to be interviewed.
But she's decided to speak out because she thinks others may have also been negatively impacted by pandemic-related healthcare shutdowns.
And according to board chair of Patients Canada Francesca Grosso, the inability to attend an in-person medical exam and the hesitation with accessing care, were not uncommon at the start of the pandemic.
Health care system doesn't prioritize patients
When COVID-19 first hit, Grosso said the combination of healthcare shutdowns and restrictions, along COVID-19 fears caused many patients to not be seen.
"A lot of patients postponed going in to get diagnostic testing done because they were afraid ... you're worried that you're going to run into people who may be infected with COVID ... there was a lot of unknown, people were terrified," she said.
On top of that, primary care physicians and specialists chose to operate in different ways, with some only taking video or phone appointments.
'I think that there should have been more outreach for those patients that are really dire ... but we don't have a system that really prioritizes patients in a way that flags for the doctor that a certain cohort of their patients require urgent follow up," Grosso said.
"It's sort of left up to the patient, the squeaky wheel, or its left up to the doctor's office to call them, which often doesn't happen."
As for Gerardi's son, Grosso said she said it sounds like he tried to be the "squeaky wheel, but couldn't get through."
These situations, Grosso said, are not unique to COVID-19, rather the pandemic has only pulled back the curtain on the province's health care faults.
And based on recent data, Gerardi's son isn't the only one facing a dire prognosis because of these faults.
With the Ministry of Health suspending some types of cancer screening and select municipalities cancelling surgeries at the start of COVID-19, there is now reportedly an increase in late-stage cancer diagnoses across the province.
Locally, Windsor Regional Hospital said its cancer centre was one of few locations in the province that kept up with cancer treatments and surgeries. A hospital spokesperson said their centre completed 549 cancer surgeries between April 1 and the end of October.
They said the cancer centre never shut down and patients were seen virtually as well as in-person.
But that only covers people who received a cancer diagnosis pre-COVID.
"My concern [is] how did patients get diagnosed with cancer through COVID?" Gerardi said.
"[My son] wasn't considered in all that math, and I'm sure there's other people out there that were getting sick and they couldn't see anybody. It was so frustrating to find this out. Okay, I get it, [he] has cancer. But why did it have to get this far? Why did it have to get this bad? I get that back in March the government shut the whole place down, but he was sick."
Cancer centre referrals down
According to data from Windsor Regional Hospital's cancer centre, there has been a decrease in cancer treatment referrals.
Between April and September this year, the hospital is reporting an 11.6 per cent decrease in radiation treatment referrals and a six per cent decrease in systemic or chemotherapy treatment referrals compared to the same time period in 2019.
"There's always concern," said WRH's regional vice president of cancer services Monica Staley Liang of the decrease in referrals. "What I can say is and what I'm confident in saying is that we have a plan for resumption of screening and resumption of services and innovative ways to optimize capacity."
As for whether Windsor has seen a jump in late stage cancer diagnoses, the hospital said the region hasn't see it and is uncertain whether it will.
"I can't foresee that ... we don't know what we don't know," she said. "We do look at what we've seen in other parts of the province, we look at that and we prepare for that ... there is that population of the unknown that have not been screened who have not arrived at primary care yet and we'll have to wait and see what that looks like in the near future."
She added that they continue to encourage people to access hospital resources during the pandemic.
'A long way ahead of him'
While what's done is done, Gerardi firmly believes that her son shouldn't have gotten to this point.
"Now that we've sat down and the fear and the sadness have settled, that's when the anger comes in. How did this kid get to stage three, where his life is turned upside down?" she said.
These days, Gerardi stays in complete isolation so that she can continue to see her son and support him during his treatments. With tumours on both of his lungs, he can't risk getting COVID-19, she said.
At this time, her son seems to be responding well to treatment though she said he still has "a long way ahead of him."