A Saanich woman diagnosed with a rare and aggressive cancer who sought treatment in the United States — afraid she’d be dead before she saw an oncologist in B.C. — says she’s alive thanks to do-it-yourself and online fundraising health care.
Last year, real estate agent Allison Ducluzeau, 57, experienced stomach pain during Thanksgiving but attributed it to overeating.
When the pain became excruciating, she went to her family doctor, who ordered bloodwork, an ultrasound and CT scan. The pain quickly became intolerable, so she headed to Saanich Peninsula Hospital’s emergency department, where she got the CT scan.
On Dec. 29, 2022, she was diagnosed with a Stage 4 abdominal cancer called peritoneal carcinomatosis.
Her family doctor advised a two-step procedure involving cytoreductive surgery, called CRS, to remove the visible tumours, followed by a treatment called hyperthermic intraperitoneal chemotherapy, or HIPEC, in which heated chemotherapy is flushed directly into the abdominal cavity.
Ducluzeau saw a general and colorectal surgeon in January of this year, where she was told she was not a candidate for surgery, that IV chemotherapy would not likely be effective, and she would not be referred for the HIPEC procedure.
She said the general surgeon told her she had two months to two years to live, and advised her talk to her family and get her affairs in order.
Ducluzeau calls trying to relay the news to her two children, ages 21 and 26, “the worst day of my life, the worst thing I’ve ever had to do.”
“I recently lost my own mother so I knew what that felt like, what it was like to live without a mother,” she said, through tears. “When I saw how it affected them, I promised them I would try, I would not give up, I would do everything I could to live.”
A research team led by her brother Toby Hinton, a former police officer in Vancouver’s Downtown Eastside, tracked down a surgical oncologist at Vancouver General Hospital/B.C. Cancer who performs CRS and HIPEC and Ducluzeau’s family doctor gave her a referral.
The first phone consult, however, wouldn’t be until Feb. 27 — and even then, there was no guarantee Ducluzeau would be eligible for the procedure or an idea of when it could be performed.
“I said how soon can I talk to an oncologist [in Victoria] because I’ve been told I only have two months possibly to live,” said Ducluzeau. “[B.C. Cancer] said it could be two weeks, it could be two months, it could be longer, we have no idea.
“Here I was being told I was going to die and I may not even talk to an oncologist before that happens,” said Ducluzeau.
“I just felt absolutely hopeless. Helpless. I felt like I had no option but to go somewhere else. Other places in Canada do HIPEC but how could I get a referral?”
Having seen the progression of her tumours between her first CT scan Nov. 23 and a second on Dec. 20, Ducluzeau didn’t feel like she had months to wait.
A plan is hatched
Aided by family and friends Ducluzeau found surgical oncologist Dr. Armando Sardi at Mercy Hospital in Baltimore who has performed the CRS and HIPEC procedure more than 1,000 times and currently does two procedures a week.
Ducluzeau phoned, talked to his assistant and had a Zoom meeting with the surgeon two days later. Ducluzeau was told she was an excellent candidate for the 12-hour procedure, with the caveat that time was of the essence.
The price tag was $153,000 US, or $205,000 Cdn, not including travel and accommodation. Ducluzeau’s brother and friends started an online fundraising webpage and 174 people raised $91,000 toward the bill. A small inheritance covered the rest.
On Feb. 2, Ducluzeau had the 12-hour procedure, performed by Sardi and another surgeon. A month later, she was back at work. She has a scar from her chest to her pubic bone, she lost four organs — appendix, gallbladder, spleen, and omentum — and not all the tumours could be removed.
Her cancer — discovered during surgery to be appendiceal cancer — was more widespread than diagnostic scans and biopsies indicated.
She underwent six months of chemotherapy in Victoria and remains under watch, but she says she no longer has any issues with pain — she was taking Tramadol daily prior to surgery — and her energy and eating are back to normal.
Sardi’s literature shows long-term outcomes demonstrate a median overall survival of 12 years for appendiceal peritoneal carinomatosis.
“Most people with advanced cancer are told nothing can be done but that’s not the case,” he said, calling CRS and HIPEC standard care for late-stage appendiceal cancer.
“There are people alive 20 years later — we don’t even talk about five years from now, we talk about 10 years because we have so many patients alive,” he said. “I can almost say there is almost no other treatment for stage 4 cancers that has the [same] results.”
However, he said, the procedure is “not for everybody” and patient profile is important. ”Surgery remains the most important aspect of the procedure, even without HIPEC,” Sardi said.
With advanced cancers, that means surgeries of 10 to 12 hours to try to remove all of the tumours and diseased organs.
Ducluzeau kept her appointment with the Vancouver surgical oncologist who runs the B.C. Peritoneal Malignancy Program, offering cytoreductive surgery and HIPEC. During that consult Ducluzeau told the surgeon she already had the procedure but would appreciate help in securing an oncologist in Victoria.
The surgeon obliged and Ducluzeau had an appointment with a B.C. Cancer oncologist within days — March 13, three months after her terminal diagnosis. He led her through chemotherapy treatments.
Politicians weigh in
During question period in the legislature on Tuesday, BC United leader Kevin Falcon and health critic Shirley Bond raised the issue of patients with late-stage cancers — Ducluzeau and Campbell River’s Kristin Logan — heading to the United States for more timely cancer treatment. Falcon noted wait times for cancer treatment in B.C. are among the worst in Canada.
Logan, 43, who was diagnosed with late-stage ovarian cancer on Sept. 18, sought treatment in Washington state, where her parents live, after being told she may face a three- or four-month wait for treatment in B.C. Her chemotherapy started on Oct. 20 and her surgery is scheduled for Dec. 18. She also has a gofundme.com page.
B.C. Health Minister Adrian Dix, who has said cancer diagnoses — now 30,000 a year — are expected to increase to 45,000 a year over the next decade, said the province has been adding resources, including 61 oncologists and 29 radiation specialists since April 1.
The province announced a 10-year cancer plan in February that includes expanding cancer-care centres in Nanaimo, Surrey, Burnaby and Kamloops.
Falcon also reported that the province is sending about 12 patients a week to Bellingham for radiation therapy, well short of the 50 patients a week the Health Ministry planned for when it announced the initiative in May to reduce wait times for breast and prostate cancer patients awaiting radiation therapy.
About 49 patients from Island Health have opted to go to Bellingham for treatment since May.
Dix said capacity was set at 50 patients a week to ensure anyone who wanted to go could do so, but some opted for treatment at home.
Meanwhile, Ducluzeau is trying to get reimbursed for some portion of the diagnostic tests and procedures done in the U.S. that she believes could have been done in Victoria and Vancouver if the wait times were not so long. So far, her claims and a retroactive referral by her B.C. Cancer oncologist have been rejected.
Among the many hurdles, she must provide documentation to verify “all avenues for treatment within the Canadian healthcare system have been exhausted.”
Also, based on her post-operative report, the Vancouver surgical oncologist said she would have followed a different treatment path, said Ducluzeau, who expects to meet with her in person to discuss the issue.
In a letter to Ducluzeau, B.C. Cancer said “the services you chose to receive in the U.S. would not have been the recommended treatment for your cancer diagnosis.”
“I’m going to deal with it but it’s not going to be the hill I die on and it’s not going to define me, it’ s not my whole mission,” said Ducluzeau.
“My mission here is to enjoy life and, in any way I can, try and effect change in our healthcare system.”
With respect to Ducluzeau’s situation, the Times Colonist was sent a statement from Dr. Helen Anderson, interim executive medical director for B.C. Cancer in Victoria: “We appreciate that any wait is too long for someone with cancer and understand the distress that patients and their loved ones feel when faced with a cancer diagnosis.”
‘I never wanted to marry again’
In May, Ducluzeau watched her daughter graduate from law school at the University of Victoria. She has been in the top 15 per cent of sales for her company most months, and has taken up running.
Then on Nov. 14, Ducluzeau married her partner of nine years, Roderick Bernasky, on a beach in Hawaii with her children in attendance.
“When I got my very grim diagnosis initially … I wrote a list of things I’d like to do before I died,” said Ducluzeau. “I never wanted to get married again but when all this came down I just really wanted to do it out of appreciation for what an amazing partner Rod has been to me.
“He’s been unwavering through the diagnosis through the surgery,” said Ducluzeau. “Sometimes it bugs me a little bit — I think he’s in denial, but he says I’m going to be around a long while and we have lots of fun left to have.”