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CanadaSudbury woman discovers cancer diagnosis was wrong

21:55  07 may  2019
21:55  07 may  2019 Source:   cbc.ca

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Boileau's diagnosis began in October 2016, after going to a walk-in clinic in the City of Greater Sudbury . Shelly Boileau (centre) decided to move back to Alberta to be closer to her family after she was diagnosed with Chronic Lymphocytic Leukemia in 2016 - only to discover that she doesn't have

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For more than two years, Shelly Boileau lived with a cancer diagnosis that completely changed her life — only to discover that she didn't have cancer at all.

Boileau's diagnosis began in October 2016, after going to a walk-in clinic in the City of Greater Sudbury, Ontario. Following that visit, she was sent to Health Sciences North, where she had multiple tests done, eventually leading to her diagnosis of Chronic Lymphocytic Leukemia (CLL).

Boileau said she was shocked when she was given her diagnosis of leukemia, but she had no reason to not believe multiple doctors.

"I have a piece of paper from blood work that says, lymphocytic leukemia, and then I go to the hospital and the hospital says 'yes, you have leukemia' and then I go to [a doctor] and she says 'yes, my team determined you have leukemia,'" Boileau recalled.

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"Then I go to [another doctor] and he says 'when you get sick enough we'll give you a bone marrow biopsy and yes you have leukemia,' how many times do you have to be told that you have leukemia that you believe it?"

Sudbury woman discovers cancer diagnosis was wrong © supplied Shelly Boileau was diagnosed with Chronic Lymphocytic Leukemia after hours of tests at Health Sciences North.

She was referred to a doctor in Sudbury who said her CLL hadn't progressed to the point of needing treatment, so she would be monitored with blood tests every three months and once her symptoms worsened she would start treatment.

Boileau said after about two years being monitored and being told by her doctor that she was progressing nicely, she decided it was time to leave Sudbury to be closer to her family in Alberta.

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"Every time I'd get a cold or I wasn't feeling well, I'd think ... has my time come that I have to have chemo, can I make it through this, am I going to make it through this?" Boileau said.

"I have been, for three years, an emotional wreck, coming home here, spending every moment I possibly can with my children and my grandchildren and watching them grow up and thinking to myself I probably won't see them grow up because of all of this."

In March, after moving back to Alberta, her doctor requested more tests, including a bone marrow biopsy to help confirm the diagnosis of CLL. Boileau said she never received a bone marrow biopsy in Sudbury, but was told she would have this test once it was time to start treatment.

In April, her doctor called her with the results. She did not have CLL or any signs of it.

Boileau said believing she had cancer for two and a half years caused her a lot of anxiety and it was also hard on her family.

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"My dad passed away in June of 2016 and three months after that we found out that my mom had cancer. It kind of rocked our family's world. It was it was scary. We were angry at the you know, at the world, at the universe for putting all this out to us and we didn't understand and we were really scared," said Boileau's daughter, Amanda Gallent, who lives in Alberta.

"I mean it's wonderful, it's great I don't have cancer but there's something so wrong with this," Boileau said.

Dr. Tom Kouroukis is the head of the hematology program at Cancer Care Ontario.

He says unlike acute leukemia — which is aggressive and usually requires hospitalization and chemotherapy right away, the kind that most people think about — CLL is actually a common form of leukemia that's typically seen in older patients.

Dr. Kouroukis says it's fairly common for patients to not require any treatment for years until the symptoms worsen.

"Officially there are criteria for CLL, you have to have a certain number of lymphocytes in the blood to meet the baseline criteria," he explained.

"So if the lymphocytes are just at the borderline of that, technically, I mean officially yeah the person would have CLL."

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Sudbury woman discovers cancer diagnosis was wrong © Provided by Canadian Broadcasting Corporation Shelly Boileau (centre) decided to move back to Alberta to be closer to her family after she was diagnosed with Chronic Lymphocytic Leukemia in 2016 - only to discover that she doesn't have cancer.

However, without knowing Boileau's specific case, he wasn't able to comment more on her diagnosis.

Mark Hartman, the senior vice president of patient experience at Health Sciences North, says he also couldn't comment on Boileau's specific case. However, he says there are different options for patients who believe they've been misdiagnosed or mistreated.

Boileau has decided against pursuing any legal action against HSN or any of the doctors originally involved in her diagnosis.

She says that right now she's focused on settling back in Alberta and she's just happy to know that she doesn't have leukemia.

"I certainly don't regret coming back to Alberta, I have my grand kids, they're here and I certainly get to spend more time with them but I would have done it on my condition, not me thinking I was being forced into something because I was sick," said Boileau.

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