Breast cancer patients travel to Germany for costly treatment unavailable in Canada
Six years after undergoing a double mastectomy and multiple punishing rounds of radiation and chemotherapy, Narda Hunt was told that her breast cancer had spread to her liver.
“You could literally see the tumour,” she told CTV News. “My stomach was so extended, I looked like I was almost nine months pregnant.”
While the five-year survival rate for breast cancer can be as high as 87 per cent, once it becomes metastatic and travels to other parts of the body, such as the liver or brain, it is largely untreatable.
“I was not able to eat,” Hunt said. “I was not able to drink water at all and (I) got to the point where I was living on (an) IV, sitting on the couch all day because I couldn’t really walk very much.”
More chemotherapy yielded no results, and with a diagnosis of stage 4 cancer, Hunt was told to prepare for the worst.
“September last year was when my oncologist told me that I only had weeks left to live and she had set me up with palliative care,” Hunt recalled.
“But deep down, I still had it in me that I was not ready, it was not my time… and that I would do whatever it takes to stay alive for my kids.”
In desperation, she began investigating regional chemotherapy: a treatment in which anti-cancer drugs are pumped through an artery to directly target a tumour, rather than the body as a whole. Regional chemotherapy is only used for certain cancers in Canada -- such as pancreatic cancer, some abdominal cancers and certain melanomas -- but it is not an approved treatment for metastatic breast cancer in the country.
But Hunt was determined, and with the help of friends and family, she was able to foot a staggering $200,000 bill to travel from her home in Collingwood, Ont. to Germany for several rounds of regional chemotherapy in Sept. 2017.
Results, she said, were almost immediate and her tumour has since shrunk considerably.
“There is very minimal cancer left on the liver,” Hunt claimed nearly a year later. She’s now even gotten back to doing things like mountain biking.
“Honestly, I feel great,” she said. “My life right now is pretty much, I would say, 95 per cent normal.”
Doctor: ‘We don’t support its use’
Despite the apparent success of Hunt’s treatment, Canadian doctors say there is just not enough evidence to prove that regional chemotherapy works for those with metastatic breast cancer.
“Regional chemotherapy for breast cancer is unproven and we don’t support its use in Ontario,” Dr. Andrea Eisen, a medical oncologist at Toronto’s Sunnybrook Health Sciences Centre, told CTV News.
“We like to have really solid evidence from clinical trials and we simply don’t have that for regional chemotherapy for breast cancer to date.”
Eisen, who also co-chairs Cancer Care Ontario’s Breast Cancer Disease Site Group, which advises the province on breast cancer care practices, says patients like Hunt should explore the “many excellent” provincially-covered treatment options before venturing overseas for something that might offer no results.
“I think we have to be careful about drawing conclusions from really anecdotal stories about one person who was told they might live a few weeks and then lived longer with a particular treatment,” Eisen explained.
“I’d like patients to know that before they embark on experimental treatment that might cost them a lot of money out of pocket, they should really carefully explore all the treatment options available to them closer to home.”
Hunt said she exhausted all Canadian options before travelling to Germany.
“I got nine more months with my children. I got nine more months with my husband. I got nine more months with life,” she said.
The treatment, she notes, has also reportedly been successfully used in Germany for more than three decades.
Dr. Karl R. Aigner, the medical director of Medias Klinikum, the clinic in the picturesque Bavarian town of Burghausen where Hunt was treated, said regional chemotherapy is not about curing patients like Hunt, but about enhancing their quality of life.
“If we can prolong a life at a good quality then we reached what we wanted, what we are aiming at,” Aigner said.
‘I was supposed to be dead last year’
Sophia Mavrokefalos of London, Ont. sees herself as another regional chemotherapy success story.
First diagnosed with stage 3 breast cancer in 2013, she underwent a mastectomy, chemotherapy and radiation. But after a year of stability, her cancer entered her pelvic bones and spine.
Despite further treatment, her cancer continued to spread, eventually engulfing her liver.
“They had told me (at) the end of July (2017) that I had about two weeks left,” Mavrokefalos recalled in an interview with CTV News.
“My liver couldn’t tolerate any other treatment, that’s what I was told… They really couldn’t do anything for me at all except transfer me to hospice.”
Days after that painful prognosis, Mavrokefalos travelled to Germany where she underwent multiple rounds of regional chemotherapy.
“My blood work got better and better, my scans got better and that’s what happened,” she said. “I’m feeling better than I have felt in probably a year-and-a-half.”
Like Hunt, Mavrokefalos has no illusions about being cured; although her tumours have shrunk significantly, they are still present. But she says that the astronomical cost -- roughly $240,000 in her case -- was worth it, if even just to have a little more time with her husband and young children.
“If we financially didn’t have this option, I wouldn’t be here,” she said, choking back tears. “I didn’t think I would be around to see another Christmas.”
Despite reservations from specialists like Dr. Eisen and a dearth of Canadian research, both Hunt and Mavrokefalos believe that their experiences should propel Canadian studies into treating metastatic breast cancer with regional chemotherapy.
More than 5,000 people die from advanced breast cancer every year in Canada, and women like Hunt and Mavrokefalos really have few other options. Besides, they both note, many other women do not have the financial resources that they do and the treatment is already available in Canada for other types of cancers.
“I’m here, I’m alive, I was supposed to be dead last year,” Hunt said. “Can they not at least do a study on it or do a trial?”
“It needs to be an option,” Mavrokefalos added. “Clearly there are individuals who would benefit from this. It’s given me extra life.”
With files from CTV’s medical affairs specialist Avis Favaro and producer Elizabeth St. Philip