But in February, she said, doctors told her the disease had spread out of control and advised her to start palliative treatments. “It was like total disaster,” Carnegie-Middlebrook, 30, of Harrow, Ont., told CBC News. “I felt like I had spent so much time telling myself I never wanted to get to this point and I heard the words and my whole world 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 believes she needs to save her life. It is my life. I know I’m just a patient for them, but “no” was the answer.- Kylee Carnegie-Middlebrook not 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 being diagnosed with this rare form of cancer. The procedure involves removing cancerous tumors from the abdominal cavity, which is then bathed in hot chemotherapy to kill any tiny cancer cells. She had her appendix removed and the cancer had spread to her abdomen. Carnegie-Middlebrook said Canadian doctors told her her cancer is now inoperable, so they won’t do CRS with HIPEC surgery again. But next month, Carnegie-Middlebrook plans to undergo surgery at Allegheny Health Network in Pittsburgh, Penn., at a cost of Cdn$100,000. “It’s scary, honestly,” Carnegie-Middlebrook said of traveling outside of Canada for care. “It’s hard to think that you’re going to go into a huge amount of debt to save your life.” CBC News has also heard from another person who was dealing with cancer at the time who was denied CRS with HIPEC surgery in Canada but was able to do it in the United States. Two and a half years after this surgery, the person said he has “no evidence of progressive disease.”
WATCHES | Carnegie-Middlebrook describes being told her cancer was inoperable:
The Essex County resident describes being told there was nothing more doctors could do
Kylee Carnegie-Middlebrook was first diagnosed with cancer in 2018. This year, doctors said the cancer had spread too far for her to be eligible for another surgery. Instead, she was told to have maintenance chemotherapy.
The US doctor 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 large intestine, which absorb nutrients and remove waste from the body. Dr. David Bartlett, who specializes in CRS with HIPEC surgery in the US, is scheduled to operate at Carnegie-Middlebrook in November. Bartlett told CBC News that the surgery involves physically removing all the tumors, which can number in the hundreds to thousands. If a tumor is difficult to remove from any organ involved, Bartlett said, the organ will also be removed if it’s not necessary. Dr. David Bartlett is the president of the Allegheny Health Network Cancer Institute. He says he has 25 years of experience performing CRS with HIPEC surgeries. (Jennifer La Grassa/CBC) Once the procedure is complete, the patient’s insides are bathed “in a warm chemotherapy bath … to kill the cancer cells that we can’t see,” said Bartlett, president of the Allegheny Health Network (AHN) Cancer Institute. Depending on how far the cancer has spread, the operation can take anywhere from three to 20 hours. “We’ve seen quite a few patients from Canada and it’s always the same reasoning, which is just that they haven’t been offered the procedure in Canada,” Bartlett said. 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 being diagnosed with cancer 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 lasted 10 hours and was 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 her doctors Alberta Health Services in Calgary. The specific reasons, according to Carnegie-Middlebrook, were that the cancer had come back too quickly and doctors weren’t sure they could remove all the tumors. “I just wanted them to try,” Carnegie-Middlebrook said. No matter how hard he pushed, he said, the doctors wouldn’t budge. “It’s my life. I know I’m just being patient with 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 that it does not comment on patient treatment decisions and that its clinicians were not available for interview. However, the hospital’s surgical oncologist, Dr Andrea McCart, said in a statement that all treatment decisions are discussed with a number of specialist radiologists, surgeons and medical oncologists, “to arrive at the best treatment plan for each individual patient”. Carnegie-Middlebrook has been through surgeries and multiple rounds of chemotherapy since 2018. (Submitted by Kylee Carnegie-Middlebrook) “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 involving both patient and tumor factors,” McCart said in the statement. He said if doctors suspect the surgery will not benefit the patient or if there is a high risk of complications or death, it would not be offered. Bartlett said he doesn’t want to talk about Canadian surgeons, but when it comes to “risk-benefit — going from a complicated 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 aggression … and a lot of that has to do with your experience with the procedures.” With this type of rare cancer, he said, there isn’t enough data available to outline the best guidelines for its treatment. With his own patients, Bartlett said, he acts aggressively with early recurrences and has found that often, repeating 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 types of rare cancers.
The specialist calls for more patient support
Canadian bioethicist Kerry Bowman, who teaches at the University of Toronto, said Carnegie-Middlebrook’s situation is “very troubling,” though he added that he does not know the full details of her case. He said his main concern is accessibility. “The Canada Health Act has several principles underpinning it that are both practical and ethical, one of which is accessibility, which as it sounds means that appropriate and reasonable treatments must be accessible to Canadians “, he said. “The Canadian health care system is under such pressure right now that I think issues of accessibility will start to emerge across the country, where can we actually get the treatment we need?” He said the Canadian government should look at ways to better support patients if more of them start relying on U.S. health care because of a lack of resources in Canada.
Family raising money for surgery
Currently, Carnegie-Middlebrook said she is in the process of applying for Ontario’s Out-of-Holiday Health Insurance Program (OHIP) coverage, but has been told it is unlikely to be approved. She said her doctors are the experts OHIP consults with when considering whether to approve such applications for coverage. 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 of Canada. Marg Carnegie says the process she saw her daughter go through was difficult and left her disillusioned with the Canadian health care system. (Jennifer La Grassa/CBC) In an email, the Ontario Ministry of Health said Ontario Health (Cancer Care Ontario) is helping the ministry review funding applications for cancer treatments outside of the country. He said Cancer Care Ontario uses a number of experts to review applications and they must declare a conflict of interest. If the reviewer is the treating physician or has evaluated the patient, the ministry said, the expert could be disqualified from the review. Carnegie-Middlebrook’s mom, Marg Carnegie, started a GoFundMe called Kylee’s Fight for Lifesaving Surgery to help pay for the surgery in the US. Carnegie said the whole process was difficult for her and left her frustrated with the health care system. “There have been some really great people who have come forward to help and we appreciate it,” Carnegie said.
