Ontario patient says Canadian doctors deemed her cancer inoperable, so she'll pay $100K Cdn for surgery

For the last four years, Kylee Carnegie-Middlebrookhas done everything she can to get rid of the cancer that's continued to grow inside of her.

But in February, shesaid,doctors told her the disease had spread beyondcontrol andadvised 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-Middlebrookwas diagnosed with appendix cancer in 2018 shortly after getting married. She said Canadian doctors who treat this type of cancerhavedenied her the surgery she feelsshe 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-Middlebrookonnot being approved for cancer surgery in Canada

Carnegie-Middlebrook hadalready undergonecytoreductive surgery (CRS) with heated intraperitoneal chemotherapy (HIPEC)once before at Toronto's Mount Sinai Hospital,two years after her diagnosis ofthis rare form of cancer.The procedure involvesremoving cancerous tumours from the abdominal cavity, which is then bathed in hot chemotherapy to kill any microscopic cancer cells. Her appendix wasremoved and the cancer had spread inside her abdomen.

Carnegie-Middlebrooksaid Canadian doctors have told her that her canceris now inoperable, so they won't perform the CRS withHIPEC surgery again. Butnext month, Carnegie-Middlebrookplans to undergo the surgery at Allegheny Health Networkin Pittsburgh, Penn., at a cost of $100,000 Cdn.

"It's scary,honestly," Carnegie-Middlebrooksaid 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 oneother person dealing with cancer at the time who had been denied the CRS with HIPEC surgery in Canada, but wasable to get it in the United States. Two and a half years after this surgery, the personsaid they have "no evidence of progressive disease."

• WATCH |Carnegie-Middlebrookdescribes being told her cancer isinoperable:

Essex County resident describes being told there was nothing more doctors could do

2 years ago

Duration 1:37

Kylee Carnegie-Middlebrook was first diagnosed with cancer in 2018. This year, doctors said the cancer spread too much for her to be eligible for another surgery. Instead, she was told to do maintenance chemotherapy.

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 communityhave coined it the "mother of all surgeries."

The appendix is a small pouch of tissue in the abdomen, andis part of the intestines and colon, which absorb nutrients and remove waste from the body.

Dr. David Bartlett, who specializes in theCRS with HIPEC surgery in the U.S., is set to operate on Carnegie-Middlebrookin November.

Bartlett told CBC News the surgeryinvolves physically removing all tumours, which can totalhundreds to thousands.

If a tumour is difficult to remove from anyorganinvolved,Bartlett said, the organwould be removed as well if it isn'tnecessary.

Once the procedure iscomplete, 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 notbeen 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-Middlebrookunderwent 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 August2020. 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 toCarnegie-Middlebrook, were thecancer 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.

Butthe hospital's surgical oncologist,Dr. Andrea McCart, said in a statement that all treatment decisions are discussed with a number of specialized radiologists, surgical andmedical 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'tbenefit the patient or if there is a high risk of complications or death, it wouldn'tbe offered.

Bartlett said he doesn't want to speak for Canadian surgeons, butwhen it comes to the "risk-benefitgoing through a complex operation with significant riskin 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 surgeryis 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 teachesat the University of Toronto, said Carnegie-Middlebrook's situation is "very worrisome," though he addedhe 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 outsideCanada.

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, MargCarnegie, started a GoFundMecalled Kylee's Fight for Lifesaving Surgeryto help them pay for the U.S.surgery.

Carnegie said thiswhole 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.