A Thunder Bay, Ont., nurse is seeking answers about why her mother, who died last year, couldn’t get an appointment with a blood disease specialist. until he received a cancer diagnosis and is pushing for changes to allow some patients to see him sooner.
Heidi Smith died in August 2022 at age 63 from stage 4 peripheral T-cell lymphoma, a rare form of blood cancer, said her daughter, Mariah Mrakic-TenHave.
Already a breast cancer survivor, Smith underwent several diagnostic tests over 15 months at the Thunder Bay Regional Health Sciences Center (TBRHSC). They included blood tests, MRIs, nasal needle aspirations and other biopsies, but the results were inconclusive.
Despite his failing health, Smith was not allowed to see a hematologist in Thunder Bay without a cancer diagnosis.
“While this was happening, his body couldn’t take it anymore,” Mrakic-TenHave said. “At what point do we say, ‘This is enough? We’ve done every test we can and our patient is not getting better.'”
Breaking: interviewed Mrakic-TenHave both at his childhood home, where he moved after his mother’s death, and at the family’s property in a trailer park on the outskirts of town.
Mrakic-TenHave said her mother underwent testing for more than a year in Thunder Bay. After that, Mrakic-TenHave contacted a surgeon in Toronto who had treated his mother’s breast cancer 10 years earlier. Three weeks later, Smith underwent a sixth biopsy, which ultimately resulted in a cancer diagnosis, followed by chemotherapy in Toronto for the next five months.
He returned to Thunder Bay to complete his treatment closer to home, but died during a COVID-19 outbreak at the hospital. Her autopsy lists the cause of death as refractory lymphoma, meaning the lymphoma did not respond adequately to treatment.
Mrakic-TenHave wants Thunder Bay Hospital to change its policy regarding referrals to specialists in two key ways:
- Once a patient receives a certain number of biopsies that return inconclusive results, they are referred to a specialist.
- A patient with a history of cancer sees a specialist when tests show inconclusive results.
“They say early diagnosis is key to fighting cancer or any disease,” Mrakic-TenHave said. “There has to be a limit. You can’t keep testing someone. In the end, my mother told me that she didn’t feel human anymore.”
Hospital and ministry respond
TBRHSC’s communications department said the hospital could not facilitate an interview or comment on a specific patient’s case. Instead, they provided written statements to Breaking:.
“Northwest Regional Cancer Care at Thunder Bay Regional Health Sciences Center follows standards of practice that are part of all cancer programs in the province. As such, a diagnosis of hematologic malignancy is established before to schedule you with a hematologist for treatment planning. TBRHSC spokesperson Marcello Bernardo said in an email.
A spokesperson for Ontario’s Ministry of Health, Bill Campbell, told Breaking: in an email that “protocols for referrals to specialists are determined at the local level.”
There are two malignant hematologists at TBRHSC. Both specialists are tasked with treating cancers, not diagnosing them.
Breaking: sought further clarity for weeks from both the hospital and the ministry, but did not get a clear answer from either on whether referrals to hematologists are determined by provincial guidelines or by individual hospitals.
The hospital does have a new pilot project underway that was designed “to facilitate and speed up the diagnosis of suspicious referrals for cancer,” Bernardo said.
“In cases where there is a suspicion of cancer but no diagnosis or lack of a primary care provider, these patients may be referred to the Medical Transitions Clinic to facilitate a diagnosis,” said TBRHSC spokesperson Raiili Pellizzari. , in an additional statement sent by email.
Neither Bernardo nor Pellizzari confirmed when this clinic first opened.
‘This is to find a solution’
Before he became ill, Smith was always outdoors, walking his dog, Bear, nearly 10 kilometers a day. While her mother was receiving cancer treatment in Toronto, Mrakic-TenHave visited her whenever she could, which meant leaving behind her two children, both under the age of four.
“It was heartbreaking, it really was. I’m not going to sugarcoat it,” he said.
Now she wonders if the outcome would have been different if her mother had consulted a hematologist in Thunder Bay and received a quicker diagnosis.
“It’s not about blaming anyone; it’s about finding a solution so that other people don’t have to go through what my mother went through,” Mrakic-TenHave said. “The protocol needs to change. She survived breast cancer. She should have had access to a hematologist.”
Smith’s first brush with cancer was in early 2012. She underwent bilateral mastectomies and reconstructive surgery, and was given a clean bill of health.
TBRHSC did not provide a response when asked by CBC Thunder Bay whether a patient with a history of cancer could see a specialist at its cancer center before a person without a prior cancer diagnosis.
T-cell lymphoma difficult to treat and diagnose
Lymphoma is an umbrella term that covers more than 80 related cancers, according to Lymphoma Canada. It is usually classified as Hodgkin or non-Hodgkin lymphoma. Lymphomas are the fifth most common cancer in Canada.
Smith’s diagnosis was less common.
T-cell lymphomas, like Smith’s, only account for about 15 percent of cases, compared with B-cell lymphomas, which account for 80 to 85 percent, said Kevin Imrie, a clinical hematologist at Odette. Cancer Center at Sunnybrook Health Sciences Center. in Toronto, where Heidi received chemotherapy.
“The cornerstone of any cancer diagnosis is the biopsy,” Imrie said. “Once the biopsy is done… you really need a pathologist who doesn’t just look at cancer in general or even necessarily lymphoma in general; you probably need a pathologist who has expertise specifically in T-cell lymphoma.”
That may involve sending biopsy material for review at a larger hospital, although it should be an automatic process for a pathologist in Thunder Bay to send material to an expert elsewhere, Imrie said.
Dr. John Kuruvilla, a hematologist at Princess Margaret Cancer Center in Toronto, also specializes in lymphoma. He co-chairs the Canadian Cancer Trials Group’s national lymphoma research group and is chair of the scientific advisory board for Lymphoma Canada.
It is not unusual for a T-cell lymphoma to reach stage 4 because cancers that affect blood cells are often more widespread when they show up on tests, he said. That doesn’t mean the disease isn’t curable, but any late-stage cancer is a challenge.
“Unlike B-cell lymphomas, where we’ve seen major advances in treatments over the last 20 years… in T-cell lymphomas, unfortunately those improvements haven’t happened as quickly,” Kuruvilla said.
difficult to diagnose
Because there are so many subtypes of lymphoma, Kuruvilla said, “it can be very difficult, even in an expert center, to make a clear diagnosis.
“Many patients may need more than one biopsy to get the answer, and that’s where the system seems to be struggling… with lack of funding, delays and the consequences of COVID, and lack of manpower, nursing, etc
“Sometimes it really takes some perseverance to make a diagnosis,” he said.
TBRHSC said it has well-established partnerships with other cancer programs in the province. The hospital supports patients seeking second opinions and sends referrals when requested.
Both Kuruvilla and Imrie said getting a second opinion can be valuable, although, as Imrie noted, this can be a challenge for patients living in northwestern Ontario.
“Receiving treatment remotely at a facility that may be hours away is not practical, it’s not going to be helpful, it’s not going to be good for someone’s quality of life,” Imrie said. “But asking for an opinion or getting a virtual second opinion can be very reassuring, not only for the patient, but also for the oncologists treating them.”
Mrakic-TenHave, her husband and two children have moved into her childhood home, where her stepfather still lives. But it is the space the family shares at Superior Shores RV Park that reminds her most of her mother, because they had both longed for it years ago.
The property is dotted with daisies, a flower Mrakic-TenHave says connects her to her mother.
Sitting on the deck by the water’s edge, she finds comfort in the waves her mother loved and in knowing that the family is enjoying the place Smith wanted them to be.