For the last four years, Kylee Carnegie-Middlebrook has done everything she can to get rid of the cancer that's continued to grow inside of her.
But in February, she said, doctors told her the disease had spread beyond control and advised her to begin palliative treatments.
"It was like total devastation," Carnegie-Middlebrook, 30, and a resident of Harrow, Ont., told CBC News.
"I felt like I had spent so much time telling myself that I never wanted to get to that point, and I heard the words and my whole world just fell apart."
Carnegie-Middlebrook was diagnosed with appendix cancer in 2018 shortly after getting married. She said Canadian doctors who treat this type of cancer have denied her the surgery she feels she needs to save her life.
It's my life. I know I'm just a patient to them, but 'no' was the answer.- Kylee Carnegie-Middlebrook on not being approved for cancer surgery in Canada
Carnegie-Middlebrook had already undergone cytoreductive surgery (CRS) with heated intraperitoneal chemotherapy (HIPEC) once before at Toronto's Mount Sinai Hospital, two years after her diagnosis of this rare form of cancer. The procedure involves removing cancerous tumours from the abdominal cavity, which is then bathed in hot chemotherapy to kill any microscopic cancer cells. Her appendix was removed and the cancer had spread inside her abdomen.
Carnegie-Middlebrook said Canadian doctors have told her that her cancer is now inoperable, so they won't perform the CRS with HIPEC surgery again. But next month, Carnegie-Middlebrook plans to undergo the surgery at Allegheny Health Network in Pittsburgh, Penn., at a cost of $100,000 Cdn.
"It's scary, honestly," Carnegie-Middlebrook said about travelling outside Canada for care.
"It's tough thinking you'll go into an enormous amount of debt to save your life."
CBC News has also heard from one other person dealing with cancer at the time who had been denied the CRS with HIPEC surgery in Canada, but was able to get it in the United States. Two and a half years after this surgery, the person said they have "no evidence of progressive disease."
- WATCH | Carnegie-Middlebrook describes being told her cancer is inoperable:
U.S. doctor has had a 'number' of Canadian patients
Carnegie-Middlebrook describes CRS with HIPEC as a "controlled car crash," and said people in the appendix cancer community have coined it the "mother of all surgeries."
The appendix is a small pouch of tissue in the abdomen, and is part of the intestines and colon, which absorb nutrients and remove waste from the body.
Dr. David Bartlett, who specializes in the CRS with HIPEC surgery in the U.S., is set to operate on Carnegie-Middlebrook in November.
Bartlett told CBC News the surgery involves physically removing all tumours, which can total hundreds to thousands.
If a tumour is difficult to remove from any organ involved, Bartlett said, the organ would be removed as well if it isn't necessary.
Once the procedure is complete, the patient's insides are bathed "in a hot chemotherapy bath ... in order to kill cancer cells that we can't see," said Bartlett, chair of the Allegheny Health Network (AHN) Cancer Institute.
Depending on how much the cancer has spread, the operation can take anywhere from three to 20 hours.
"We have seen a number of patients from Canada and it's always the same reasoning, which is just that they have not been offered the operation in Canada," said Bartlett.
He added that sometimes, patients also don't want to wait for a scheduled surgery in Canada and find they can get an earlier date in the U.S.
'I just wanted them to try'
After her cancer diagnosis in 2018, Carnegie-Middlebrook underwent surgery and chemotherapy. She was considered cancer free until 2020. Since then, the cancer has returned twice.
Carnegie-Middlebrook's first CRS-HIPEC surgery was 10 hours long and performed by doctors at Mount Sinai Hospital in Toronto in August 2020. She was denied a second surgery by both her medical team at Mount Sinai and doctors at Alberta Health Services in Calgary.
The specific reasons, according to Carnegie-Middlebrook, were the cancer had come back too quickly and doctors were uncertain they could remove all the tumours.
"I just wanted them to try," said Carnegie-Middlebrook. No matter how much she pushed, she said, the doctors wouldn't budge.
"It's my life. I know I'm just a patient to them, but 'no' was the answer."
Based on her condition and similar cases, Carnegie-Middlebrook said, doctors told her she had about a year to live.
A spokesperson for Mount Sinai told CBC News it does not comment on patient treatment decisions and its clinicians were not available for an interview.
But the hospital's surgical oncologist, Dr. Andrea McCart, said in a statement that all treatment decisions are discussed with a number of specialized radiologists, surgical and medical oncologists, "in order to come up with the best treatment plan for each individual patient."
"Cytoreduction and HIPEC is a complex procedure; repeat surgery even more so. Patients are highly selected and the procedure may not be offered for a variety of reasons that include both patient and tumour factors," McCart said in the statement.
She said if doctors suspect the surgery wouldn't benefit the patient or if there is a high risk of complications or death, it wouldn't be offered.
Bartlett said he doesn't want to speak for Canadian surgeons, but when it comes to the "risk-benefit — going through a complex operation with significant risk — in the U.S., there may be more appetite for that than in Canada."
"I would say there's a different philosophy in terms of the level of aggressiveness ... and a lot of that comes down to your experience with the procedures."
With this sort of rare cancer, he said, there isn't enough data available that can outline the best guidelines for treating it.
With his own patients, Bartlett said, he acts aggressively with early recurrences and has found that often, doing a repeat CRS with HIPEC surgery is more effective and leads to a better outcome.
Moving forward, Bartlett said, there needs to be more organized clinical trials that provide guidance on these sorts of rare cancers.
Expert calls for more patient support
Canadian bioethicist Kerry Bowman, who teaches at the University of Toronto, said Carnegie-Middlebrook's situation is "very worrisome," though he added he doesn't know the full details of her case.
He said the top concern for him is one of accessibility.
"The Canada Health Act has various principles that underpin it which are both practical and ethical, one of which is accessibility, which just as it sounds means that appropriate and reasonable treatments have to be accessible to Canadian citizens," he said.
"The Canadian health-care system is under such strain presently that I do think questions of accessibility are going to begin to emerge around the country, in which can we actually get the treatment that we require?"
He said the Canadian government should look at ways to better support patients if more of them start to rely on U.S. health care due to the lack of resources in Canada.
Family raising money for operation
For now, Carnegie-Middlebrook said she's in the process of applying for out-of-country Ontario Health Insurance Plan (OHIP) coverage, but she's been told it's unlikely to be approved.
She said her doctors are the experts OHIP consults with when looking into whether to approve such coverage applications. She said her doctors told her it would create a "dilemma" if they denied her the surgery, but then told OHIP to cover it outside Canada.
In an email, the Ontario Ministry of Health said Ontario Health (Cancer Care Ontario) helps the ministry look over funding applications for out-of-country cancer treatments.
It said Cancer Care Ontario uses a number of experts to review the applications, and they are required to declare a conflict of interest. If the reviewer is the treating doctor or has assessed the patient, the ministry said, the expert could be excluded from the review.
Carnegie-Middlebrook's mom, Marg Carnegie, started a GoFundMe called Kylee's Fight for Lifesaving Surgery to help them pay for the U.S. surgery.
Carnegie said this whole process has been difficult for her, and has left her frustrated with the health-care system.
"There's been some really great people come forward to help and we appreciate it," said Carnegie.
Ontario patient says Canadian doctors deemed her cancer inoperable, so she'll pay $100K for U.S. surgery - CBC.ca
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