'I won't be here next year': Canadians robbed of life by delayed diagnoses amid pandemic
TORONTO -- Bonnie Robinson is adamant about getting a mammogram every year.
With a history of breast cancer in her family, the 73-year-old from Kemptville, Ont. understands the importance of getting her regular screens so any abnormalities are caught early, before becoming untreatable.
"I have been religious about going for my physicals," Robinson said in a telephone interview with CTVNews.ca on Tuesday.
However, when the COVID-19 pandemic hit, medical screenings including mammograms, PAP smears, MRIs endoscopies, among others, were put on hold to deal with the outbreak of virus cases that overwhelmed hospitals across the country.
Robinson said her left breast became dense in September 2020, and called her family doctor asking for a mammogram, realizing she was not notified of her yearly checkup months earlier. She was not able to get an appointment for a mammogram until January 2021. Her results came back abnormal and a second mammogram, done in February, confirmed she had Stage 4 breast cancer.
While doctors were able to get her in for a lumpectomy in early April 2021, Robinson said her recovery was slow and painful. She was experiencing burning across her back and down her legs, was struggling to walk, and developed a sebaceous cyst on her head. This prompted her doctor to order more screens to check if the cancer had spread.
A bone scan confirmed that Robinson's breast cancer had metastasized to her bones. Cancer in the bones is incurable, and the only treatment is to ease pain and slow the progression of the disease.
"It's pretty well a prognosis of early demise," Robinson said.
Robinson is among several Canadians who reached out to CTVNews.ca saying their diagnoses of cancers, autoimmune disorders and incurable conditions could have been caught sooner, and possibly prevented from advancing to late stages, had the COVID-19 pandemic not delayed their annual screenings and checkups.
"If I'd had my regular mammogram at the time that I usually have it… I might have not had any of this or maybe it wouldn't metastasized into my bones," Robinson said.
Prior to her diagnosis, Robinson said she led a healthy lifestyle that included golfing two to three times a week. Now, she says the medication has left her exhausted and unable to be physically active.
Robinson's doctor has told her that people can live "some time" with bone cancer, but the net survival rate, according to the Canadian Cancer Society, is five years.
Robinson says her diagnosis means she won't be able to see her new great-granddaughter grow up.
"It's very depressing to think that it could have been possibly prevented," she said.
DELAYS ALSO AFFECTING DOCTORS
Dr. Marina Malak, a family physician in Mississauga, Ont., told CTVNews.ca that doctors are continuing to "play catch-up" on certain procedures and screenings for patients due to COVID-19 lockdowns in the early days of the pandemic that have since created a backlog.
She said in a telephone interview Tuesday that a "consequence" of putting these tests on hold is a delay in diagnosis of serious, life-changing conditions for many Canadians.
"It's a time crunch and it's stressful for providers and patients alike," Malak said.
She explained that when a test comes back abnormal, the patient is advised to redo the screening. However, because of lockdowns during the pandemic, Malak said some patients have been waiting between six months and two years to complete this second screen.
"So by then, you can imagine that there might have been some changes in the cells or some progression of disease," Malak said.
Once doctors’ offices reopened and screenings resumed, Malak explained that there was an overabundance of Canadians needing these tests, but not enough doctors to conduct them in a timely manner. She noted that this added to feelings of burnout among physicians.
"We're having to deal with so much at one time, trying to schedule people in for their examinations, deal with the acute issues, and we're dealing with a pandemic that's still going on," Malak said.
She said the situation is frustrating for doctors because COVID-19 restrictions imposed by federal and provincial governments are "really out of our control," she says. Despite this, Malak said it is usually the doctors who get the brunt of a patient's anger over these disruptions to health services.
"The frustration is very real, both for providers and the patients because inevitably the question comes up, 'if this had been done earlier, would we have caught it earlier?'" Malak said.
"I don't know the answer… But what I do know is that so many things have been impacted by the pandemic that the patients are not alone and the result is what we're dealing with now."
STAGE 4 CANCER DIAGNOSIS
Debbie Piper, a retired registered nurse from Maple Ridge, B.C., told CTVNews.ca that she had two, random falls in June 2020. The 65-year-old said in an email Wednesday that her local hospital had a COVID-19 outbreak at the time and she did not go to the emergency room for fear of being admitted and contracting the disease.
In August 2021, Piper says she fell a third and fourth time. That's when her husband called 911 and she was taken to a hospital where she underwent a CT scan. The ER doctor told her she likely had already had a "major stroke" or brain cancer.
Piper said she remained at the hospital for a week, undergoing another CT scan, an echo-cardiogram, an MRI, and was transferred to another hospital for a bronchoscopy. She was officially diagnosed on Aug. 29, 2021 with Stage 4 lung cancer that had metastasized to the brain.
Piper said she was discharged Sept. 4 and told to wait to be seen by a cancer specialist to discuss treatment. While waiting to see a cancer specialist, Pieper says she developed paralysis, first losing "all function" in her right arm and then her right leg. She also began to have seizures.
Piper began seeing cancer specialists at the end of September, but was re-admitted to the hospital on Oct. 12 for yet another fall.
At the end of October, she underwent five rounds of radiation, targeted at her brain, and was put on steroids to help with her paralysis. Piper has since been unable to regain full function of her right arm and as a result, has not received any other treatment. Piper said her doctors have advised that her health is too "unstable" for further cancer treatment at this time.
"My body is going to fail. There is no cure," Piper said. "My cancer team has been very slow to do anything with weeks going by without treatment. They are failing me and my family."
Piper did have a post-radiation procedure follow-up scheduled for Nov. 19, however, it was cancelled due to severe flooding in the province.
"My prognosis is six months. I'm now at four months and deteriorating," Piper said. "I'm being left to die without treatment and I want to live."
Piper said she now has difficulty speaking due to brain swelling. Her responses to CTVNews.ca were written with the help of her daughter, Elizabeth Langley, because of this.
"If I was treated sooner, I wouldn't have lost the ability to use my arm. The brain swelling would have been minimized and I wouldn't be refused chemotherapy as collateral for late treatment," Piper said.
Piper says late-stage diseases need to be taken seriously and supports need to be in place quickly, pandemic or not.
"I feel at a loss that I won't be here next year for my kids and family. I have young grandkids and I will not get to see them grow up," she said.
STAGE 1 CANCER DIAGNOSIS
Terri Potratz, of Salt Spring Island, B.C. was experiencing symptoms similar to that of hemorrhoids for six months before she finally decided to call her doctor in September 2020.
The 38-year-old mother of two young boys told CTVNews.ca in a telephone interview Wednesday that she was nervous to be in a healthcare setting during the early days of the pandemic.
"I just discounted the symptoms and thought they would go away," Potratz said. "With everything else going on with the pandemic, I just didn't think it was an issue."
After a physical exam, Potratz's family doctor said her symptoms were likely hemorrhoids, but referred her to a gastroenterologist anyways. She had a virtual appointment with the gastroenterologist in early 2021 who booked her for a colonoscopy.
Following the results of the colonoscopy, Potratz was diagnosed with Stage 1 rectal cancer in late June 2021. She wasn't able to start chemotherapy treatment in Vancouver until October this year due in part to further backlogs in the health system and her desire to be at home to see her eldest son start kindergarten.
Potratz said her diagnosis is scary and surprising given her young age.
"Colorectal cancer is common amongst older people, and I don't have any of the kind of lifestyle factors that would seem to contribute to this. It's also not hereditary," Potratz said.
Now, Potratz is nearly finished her six-week, chemotherapy treatment course and will complete another round of scans in the coming months to see if she needs surgery.
If there wasn't a pandemic, Potratz says she wouldn't have hesitated to go to the doctor when she first started experiencing symptoms. Potratz urges others not to follow in her footsteps, and says she can't help but wonder where her health would be had she gone in to see her doctor sooner.
Paul Breeze of Calgary went to the doctor in February 2021 after developing severe pain in his lower back. The 75-year-old had a mild stroke the year prior in February 2020 and had suffered a heart attack in November 2016.
While Breeze told CTVNews.ca in a telephone interview Wednesday that he was able to get an X-ray, ultrasound and CT scan within a few weeks, he was told he would be unable to get a diagnosis until the doctor had the results of an MRI. However, the soonest Breeze could get in for an MRI was at the end of October.
Following the results of his MRI a few days later, Breeze was diagnosed with spinal stenosis, a narrowing of the spaces in the spine that can compress the spinal cord and nerve roots exiting each vertebrae.
Breeze says he has been prescribed various pain medications since February while he waits for surgery, but says he's been given no timeframe for the operation.
"My family doctor said due to COVID, maybe other things, it could be delayed and may be over a year away," Breeze said. "Right now, I have no idea when or if the surgery can be done."
An avid walker, Breeze said he can't walk more than 2,000 steps a day anymore given his level of pain. He used to be adamant about getting in 10,000 a day.
"I tend to lie down a lot. So no exercise, I'm not doing housework, I'm not cleaning the car or helping move things around… my mood is very low," he said.
Breeze said he likely would have had better treatment options and be in less pain had he not had to wait months for an MRI to be diagnosed.
"It's very depressing. Am I suicidal? No, but the word has come to my mind," he said.
Lori Pearson, who lives in Cobourg, Ont., says she feels "hopeless" and "let down" by the health system.
"The delay in getting my diagnosis and further treatment is a source of great grief for me," the 64-year-old said in a telephone interview with CTVNews.ca on Tuesday.
Pearson began feeling ill in March 2020, shortly before provinces went into lockdown. Pearson was having issues breathing, but struggled to gain access to a doctor as her family physician had just retired and clinics were no longer accepting in-person appointments.
Pearson said it took her a month and half to get an appointment with a doctor who initially dismissed her symptoms. Pearson kept pushing and was eventually referred to a respirologist, however, the waitlist to see the lung specialist was nearly three months.
Upon finally seeing the respirologist, Pearson was recommended for various testing including bloodwork and a CAT scan. Pearson said getting appointments for these tests and waiting on the results also took months.
In April 2021, Pearson was diagnosed with a rare autoimmune disorder called systemic scleroderma. The disorder is characterized by a buildup of scar tissue, or fibrosis, in the skin and other organs caused by an overproduction of collagen in the body.
There's currently no cure for systemic scleroderma, so treatments are focused on decreasing the severity of specific symptoms through autoimmune suppressants to manage and prevent additional complications of the disease.
"I cried for a couple of weeks when I got the results," Pearson said.
Pearson said the autoimmune disorder has resulted in excessive fibrosis in her lungs, and has impacted her digestive system, joints and muscles. Pearson said she has no energy and is in "constant pain."
While she has been prescribed supplemental oxygen to help with her lungs, Pearson said she is still waiting to hear back from the respirologist on a treatment plan. Before being prescribed immunosuppressants, Pearson says she has to see various other specialists, including an ENT, cardiologist and gastroenterologist, for routine tests.
However, Pearson says it is taking months to get appointments with these various physicians and she doesn't know if she will make it that long.
"Waiting for the medication that would slow down the disease is very frustrating and scary because you don't know at what pace it's progressing," Pearson said.
"The irony [is] if I could not breathe due to COVID, I would have been treated already."
Edited by CTVNews.ca senior producer Mary Nersessian