B.C. woman gets surgery in U.S., says wait times at home could have cost her life | Globalnews.ca
[ad_1]
Allison Ducluzeau has just returned from a dream trip to Hawaii where she married the love of her life on the beach. But it was a wedding she couldn’t even imagine earlier this year.
It all started last year at Thanksgiving when Ducluzeau said she started to feel pain in her abdomen. She chalked it up to eating too much but after the pain persisted for a few weeks, she thought she should go and see her family doctor. She started doing tests, an ultrasound, and a CT scan, but she said everything would take weeks to get an appointment.
“In November, I ended up at emergency because the pain was just getting progressively worse,” she said. “I didn’t get to sleep one night and I woke up my now husband and said, I think we better go to emergency. So we did. And when I was there, I got a CT scan or I was booked for one the next day and the results of the CT scan indicated it looked like it might be something called peritoneal carcinomatosis, which is abdominal cancer.”
It is caused by a primary cancer that has spread throughout the abdomen but it needed to be confirmed with a CT-guided biopsy. She got one in early December but the results were inconclusive due to the small sample size. When she got another one and those results showed she had stage 4 peritoneal carcinomatosis, her doctor referred her to the BC Cancer Agency.
Ducluzeau said her family doctor told her that with this type of cancer, they usually do a procedure called HIPEC, which involves delivering high doses of chemotherapy into the abdomen to kill the cancer cells. But when she saw the consulting surgeon at the BC Cancer Agency in January, she said she was told she was not a candidate for surgery.
“Chemotherapy is not very effective with this type of cancer,” Ducluzeau said the surgeon told her. “It only works in about 50 per cent of the cases to slow it down. And you have a life span of what looks like to be two months to two years. And I suggest you talk to your family, get your affairs in order, talk to them about your wishes, which was indicating, you know, whether you want to have medically assisted dying or not.”
Ducluzeau said she was floored by the news and she had to tell her kids that night.
“That was honestly the worst day of my life,” she said. “Telling them, oh, it’s the hardest thing I’ve ever done. Just seeing how upset they were and having lost my own mum just a short while prior to that and knowing what it was like, like going through life without a mother.”
It was then that Ducluzeau promised herself to do everything she could to find another treatment and a better outcome.
She said she didn’t even see an oncologist with BC Cancer until two-and-a-half months later but at that point, she had already received treatment somewhere else.
Her brother contacted his mother-in-law who lives in Taiwan and she was able to get some advice from an oncologist there, after only waiting an hour. That oncologist confirmed that HIPEC was the treatment for Ducluzeau’s cancer. She set up a Zoom call with that oncologist later that week but then she found out about Dr. Armando Sardi at the Mercy Medical Center in Baltimore, Maryland.
“I had an appointment to speak with him via Zoom as well within a week and then also in Washington State,” she explained. “So there were two hospitals in Taiwan, one in Washington State and one in Baltimore that were able to take me as a patient.”
Ducluzeau decided to get treatment with Sardi in Baltimore.
“I had to fly to California to get one of my diagnostic scans done there, a PET scan, because I wasn’t getting in here and I had to pay to have another CT scan done when I got to Baltimore because they couldn’t get it in time before I left,” she said.
Before she left, Ducluzeau said she called BC Cancer to ask how long it might be to see the oncologist was told it could be weeks, months, or longer, they had no idea.
“And I said, ‘Well, will it help if my doctor phones on my behalf?’ And they said, ‘no’. And my doctor submitted my referral again and still no word. No word at all from (BC Cancer) until after I flew to Baltimore, had my surgery and got home.”
With the help of a surgeon in Vancouver, Ducluzeau finally got a telephone appointment with an oncologist at BC Cancer for the middle of March – two-and-a-half months after receiving her diagnosis and the news that she may only have two months to two years to live.
“I am so proud of where I live and being a Canadian and (living in) Victoria, I just never thought in a million years that that would be my experience,” she said. “I was disappointed and, in fact, disgusted by the way I was treated.”
Ducluzeau said if she had the chance to talk to Health Minister Adrian Dix she would ask what is really being done to improve the system.
“There’s a lot of promises I’m hearing. But, you know, we need boots-on-the-ground action right now. What can you do to shorten these wait times? How can you prioritize cases so that people with aggressive stage four cancer get seen by someone and when they do get seen, they get offered treatment and not MAID like I was the first time?”
MAID stands for medical assistance in dying.
Ducluzeau said she spent more than $200,000 for the surgery, chemotherapy, scans, travel and accommodation. But she would have preferred to have the care at home.
“I would have much preferred to have been able to have this care at home where I could have had the support of friends and family and my husband could have as well because half the time I was out of it,” she said. “But he was there by himself in a strange city, caring for someone and terrified about my well-being.”
Dix told Global News Monday that the government is in the midst of the biggest hiring period it’s ever had.
“Sixty-one oncologists since April 1st have been hired by BC Cancer to address those very questions,” he said of Ducluzeau’s experience. “When I became minister of health, there was only one place with a PET CT scanner, and that was in Vancouver. We’ve added them in Victoria and in Kelowna.”
Dix acknowledged that there is still room for improvement.
“B.C. is seeing a very large increase in population, in an aging population, and that’s why we’re responding with a 10-year cancer plan,” he added. “New cancer centres in Nanaimo, in Surrey, in Burnaby and in Kamloops. It’s a significant investment in equipment, but also really importantly in doctors and providers.”
Sardi, the director of the Institute for Cancer Care at Mercy Medical Centre in Baltimore, said when he examined Ducluzeau’s case, he looked at her quality of life before and after the operation in addition to the proposed success of the procedure.
“I am a very aggressive surgeon from that point of view, but I have been doing this procedure for over 30 years and we have so many people alive beyond ten, 15 years, 18, 20 years later,” he said. “That is pretty impressive, you know?”
Sardi said at no time did he think Ducluzeau wasn’t a good candidate for the HIPEC surgery.
“Without the surgery, there is not really a good hope. But it requires, of course, the expertise of someone who is willing to spend the hours because these are long operations that lies somewhere between eight and sometimes 12, 15 hours,” he added. “But most of the time somewhere between eight and 10 hours.”
Sardi added that seeing Ducluzeau get married and enjoy a honeymoon, it’s the reason he keeps doing this job and helping people.
“I have done over a thousand of these procedures and we have more than 600 patients alive,” he said. “We have seen patients from over 600 cities and 12 countries so far. And people come from everywhere.”
Ducluzeau said she is doing well now and thanks the team at Mercy Medical Center for their care.
“I feel 100 per cent,” she said. “Some days even better. There is nothing that I did before I got sick that I can’t do now. I mean, I can ride my bike 15 kilometres and go have dinner with friends and ride home afterwards. I can golf 18 holes without feeling tired. I started running again and I haven’t run for 10 years.”
She said she was back at work a month after having her surgery. But the financial burden is still weighing heavily on her.
HIPEC is considered the standard for perineal tumors when possible but a letter from the BC Cancer Agency does not agree with this assessment.
Ducluzeau is trying to apply to have her medical bills funded by BC Cancer, considering she had to travel out of the province for care. However, the letter states “the services you chose to receive in the U.S. would not have been the recommended treatment for your cancer diagnosis.”
The BC Cancer Agency is refusing the provide documentation that wouled allow Ducluzeau to be reimbursed for the cost of out-of-country care, citing she did not proceed with additional investigations, such as a colonoscopy and laparoscopy.
“Universal healthcare really doesn’t exist,” Ducluzeau said. “My experience is it’s ‘do it yourself’ health care and GoFundMe health care.
For now, she is trying to focus on married life and taking it day by day.
“I’m calling this my bonus round and I’m just trying to find joy in every day.”
Sign up to receive newsletters and breaking news email alerts.
[ad_2]
