It took 15 months and 6 biopsies before Heidi Smith was diagnosed with T-cell lymphoma

A nurse in Thunder Bay, Ont., is seeking answers about why her mother — who died last year — couldn’t get an appointment with a blood-disease specialist until she received a cancer diagnosis, and is pushing for changes that would let some patients see one sooner.

Heidi Smith died in August 2022 at age 63 of Stage 4 peripheral T-cell lymphoma, a rare form of blood cancer, said her daughter, Mariah Mrakic-TenHave.

Smith, who was already a breast cancer survivor, received a number of diagnostic tests over 15 months at the Thunder Bay Regional Health Sciences Centre (TBRHSC). They included blood tests, MRIs, needle nose aspirations and other biopsies — but the results kept coming back inconclusive.

Despite her declining health, Smith was not allowed to see a hematologist in Thunder Bay without a cancer diagnosis.

“While this was going on, her body couldn’t take it anymore,” said Mrakic-TenHave. “At what point do we say, ‘This is enough? We’ve done all the tests we can and our patient is not getting any better.'”

CBC News interviewed Mrakic-TenHave at both her childhood home, where she moved after her mother died, and the family’s property at an RV Park just outside the city.

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 her mother’s breast cancer 10 years earlier. Three weeks later, Smith had a sixth biopsy, which finally resulted in a cancer diagnosis, followed by chemotherapy in Toronto over the next five months.

She returned to Thunder Bay to complete her 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 properly respond to treatment.

Mrakic-TenHave wants to see the Thunder Bay hospital change its policy related to specialist referrals in two key ways:

• Once a patient receives a certain number of biopsies that yield inconclusive results, they are referred to a specialist.
• A patient with a previous history of cancer gets to see a specialist when testing yields inconclusive results.

“They say an early diagnosis is key for fighting cancer or fighting any illness,” Mrakic-TenHave said. “There needs to be a limit. You can’t just keep testing somebody. My mom told me at the end, she didn’t feel human anymore.”

Hospital, 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 CBC News.

“Regional Cancer Care Northwest at Thunder Bay Regional Health Sciences Centre follows the standards of practice that are part of all cancer programs in the province. As such, a diagnosis of hematological malignancy is established prior to being scheduled with a hematologist for treatment planning,” said TBRHSC spokesperson Marcello Bernardo in an email.

A spokesperson for Ontario’s Ministry of Health, Bill Campbell, told CBC News in an email that “protocols for referrals to specialists are determined at the local level.”

There are two malignant hematologists at the TBRHSC. Both specialists are tasked with treating cancers, not diagnosing them.

CBC News sought further clarity for weeks from both the hospital and the ministry, but didn’t get a clear answer from either as to whether referrals to hematologists are determined by provincial guidelines or individual hospitals.

The hospital does have a new pilot project underway that was designed “to facilitate and expedite a diagnosis of referrals suspicious of cancer,” said Bernardo.

“In instances where there is a suspicion of cancer but no diagnosis or lack of primary care provider, these patients can be referred to the Medical Transitions Clinic to facilitate a diagnosis,” TBRHSC spokesperson Raiili Pellizzari said in an additional emailed statement.

Neither Bernardo nor Pellizzari would not confirm when this clinic first opened.

‘This is to find a solution’

Before getting sick, Smith was always outdoors, walking her dog, Bear, nearly 10 kilometres a day. While her mother was receiving cancer treatment in Toronto, Mrakic-TenHave visited whenever she could, which meant leaving behind her two children, both under four years old.

“It was heartbreaking, it really was. I’m not going to sugarcoat it,” she said.

She now wonders whether the outcome would have been different if her mother had seen a hematologist in Thunder Bay and received a quicker diagnosis.

“This is not to blame anybody; this is to find a solution so other people don’t have to go through the same thing that my mom went through,” said Mrakic-TenHave. “The protocol needs to change. She was a breast cancer survivor. She should have had access to a hematologist.”

Smith’s first brush with cancer was in early 2012. She had bilateral mastectomies and reconstructive surgery, and was given a clean bill of health.

TBRHSC didn’t provide an answer when asked by CBC Thunder Bay if a patient with a previous history of cancer could see a specialist at its cancer centre sooner than a person without a prior cancer diagnosis.

T-cell lymphoma hard to treat, diagnose

Lymphoma is an umbrella term that covers more than 80 related cancers, according to Lymphoma Canada. It is usually categorized as either Hodgkin’s or non-Hodgkin’s lymphoma. Lymphomas are the fifth most common cancer in Canada.

Smith’s diagnosis was less common.

T-cell lymphomas, like Smith’s, only make up about 15 per cent of cases, compared to B-cell lymphomas, which comprise 80 to 85 per cent, explained Kevin Imrie, a clinical hematologist at the Odette Cancer Centre at Sunnybrook Health Sciences Centre in Toronto, where Heidi received chemotherapy.

“The cornerstone of any cancer diagnosis is the biopsy,” Imrie said. “Once you get the biopsy … you really need a pathologist who doesn’t just see cancer in general or even necessarily lymphoma in general; you probably need a pathologist who has an expertise in T-cell lymphoma specifically.”

That may involve sending biopsy material to be reviewed at a larger hospital, though 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 the Princess Margaret Cancer Centre in Toronto, also specializes in lymphoma. He co-chairs the national research group for lymphoma under the Canadian Cancer Trials Group and is chair of the scientific advisory board for Lymphoma Canada.

It’s not unusual for a T-cell lymphoma to reach Stage 4 because cancers that affect blood cells are often more disseminated by the time they show up in tests, he said. That doesn’t mean the disease isn’t curable — but any late-stage cancer is challenging.

“Unlike in B-cell lymphomas where we’ve seen major advances in treatments over the past 20 years … in T-cell lymphomas, those improvements, unfortunately, have not come as quickly,” Kuruvilla said.

Difficult to diagnose

Since there are so many subtypes of lymphoma, Kuruvilla said, “It can be very challenging, even at an expert centre, to make a clear diagnosis.

“Many patients may need more than one biopsy to get the answer, and so that’s where the system seems to be struggling … with lack of funds, and delays and the fallout from COVID, and lack of manpower, nursing power, etc.

“Sometimes some persistence is really needed 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 upon request.

Both Kuruvilla and Imrie said getting a second opinion can be valuable, though as Imrie pointed out, this can be challenging for patients living in northwestern Ontario.

“Getting treatment remotely at a centre that may be hours away isn’t practical, isn’t going to be helpful, isn’t going to be good for someone’s quality of life,” Imrie said. “But going once for an opinion or getting a virtual second opinion, that can be very reassuring, not only for the patient, but also for their treating oncologists.”

Mrakic-TenHave, her husband and their two children have moved into the childhood home where her stepfather also still lives. But it’s the space the family shares at Superior Shores RV Park that reminds her most of her mom, because they had both longed for it years ago.

The property is dotted with daisies, a flower Mrakic-TenHave said 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 the family is enjoying the place Smith wanted them to be.