BELINDA'S CHOICE
Former MP pushes for better cancer care options in Canada after going to the U.S. for treatment
A single lump in her right breast was the loose thread that unravelled Belinda Stronach’s world. “It kind of stops you in your tracks,” Stronach told Postmedia News in an exclusive interview.
“You go about your daily life and you don’t wake up in the morning thinking, ‘Oh my goodness, I’m going to have breast cancer.’”
It was April 2007 when Stronach, former MP and CEO of auto parts giant Magna International, was diagnosed with the disease. A few months later, she underwent a mastectomy — the surgical removal of her breast — and reconstructive surgery in California.
A surgeon in Los Angeles offered Stronach, then 41, an innovative, single-stage surgery that spared her nipple, an option she said was not available to her in Canada.
“It was quite different than any other option that I was given in Canada,” she said. “It meant I could have the reconstruction at the same time, and important to me was I could keep my nipple.”
Stronach is one of thousands of women diagnosed with breast cancer every year in Canada. Many have mastectomies as part of their treatment but, unlike Stronach, never go on to benefit from reconstructive breast surgery.
In this series, women share their experiences of living with a mastectomy: a diminished sense of femininity, a loss of self-worth, frustration at not knowing who to turn to for help, and scars that are a constant reminder.
While not all mastectomy patients seek breast reconstruction, many are never informed of the procedure to begin with.
Some live in regions where there is no immediate access to a plastic surgeon. Others are not told due to difficulties co-ordinating operating time between general surgeons who do mastectomies and plastic surgeons doing reconstruction.
For those aware of the option after undergoing mastectomies, their anguish is amplified by multiyear queues for surgery and the misconception that what they seek is cosmetic, akin to breast augmentation. Some complain of a lack of surgical options and a lack of plastic surgeons in Canada, causing them to opt for the procedure south of the border.
Their stories highlight a health-care system failing to provide a muchneeded service for women in this country.
Breast cancer is the most common cancer affecting women in Canada.
One in nine women is expected to develop the disease during her lifetime, according to the Canadian Cancer Society. Last year, 23,400 women were diagnosed.
But fewer women are dying from the disease, likely due to increased screening and improvements in treatment. The current five-year survival rate in Canada is 88 per cent.
Lumpectomy and mastectomy, along with chemotherapy and radiation therapy, are standard treatments for breast cancer. A lumpectomy involves removing a portion of the breast, while a mastectomy removes the entire breast, and sometimes the lymph nodes and chest muscle.
For women who have mastectomies, and some who have lumpectomies depending on how much tissue is removed, there is the option of breast reconstruction. Reconstruction can be immediate, performed at the same time as the mastectomy, or delayed, performed in a separate surgery later.
The surgery can use implants, or can be autologous — using skin, fat and sometimes muscle from another part of the patient’s body, such as the abdomen, hips, buttocks or thighs — to reconstruct the breasts. A combination of the two is a third option.
Despite more women surviving the disease, few ever undergo reconstruction. While not all want it, the surgery rates remain remarkably low despite the survivor group continuing to balloon.
In 2010 to 2011, 24,735 women had mastectomies in Canada, according to the Canadian Institute for Health Information.
Of those, just 945 women — about one in 26 — had immediate reconstruction. Only 1,719 women — about one in 15 — had delayed reconstruction.
When Stronach discovered the lump in her right breast in early 2007, she was also dealing with changes in her professional life. In April of that year, Stronach — MP for the Toronto-area riding of Newmarket-Aurora — left politics to take on the role of executive vice-chair of Magna, the auto parts company founded by her father, Frank Stronach. Before her jaunt into politics in 2004, when she also ran for leadership of the federal Conservatives, Stronach was Magna’s CEO.
After getting a mammogram, Stronach said her fears were temporarily allayed when the scan turned up clear. But when the lump continued to grow, an ultrasound and biopsy revealed ductal carcinoma in situ (DCIS), the most common type of non-invasive breast cancer. Although it isn’t life-threatening, if left untreated DCIS can spread into surrounding tissue.
“It was contained to the breast, so that to me was the positive to focus on at that point in time,” she said. “That was a big blessing.”
Stronach went into research mode. On top of the shock of a diagnosis, choosing a treatment plan is overwhelming, she said. “It’s a whole new subject matter you have to become an expert in.”
She decided on a lumpectomy, a surgical procedure in which only the tumour and some surrounding tissue are removed, conserving most of the breast. After a lumpectomy, a pathologist examines the mass to ensure there are no cancer cells in the tissue surrounding the tumour, called the margins.
If there are, the patient must have more tissue removed until the margins are clear.
“They didn’t get clean margins on the lump,” Stronach said.
Before deciding on her next course of treatment — either another lumpectomy along with radiation, or a mastectomy without radiation — Stronach sought opinions from several physicians. She eventually chose a mastectomy, of which the only comforting prospect was the option of immediate implant-based breast reconstruction.
A doctor would remove the breast, including the nipple. Then, a plastic surgeon would place a tissue expander — a temporary implant that is slowly injected with saline solution over several months — to stretch the pectoral muscle and skin. The expander would later be removed and replaced with a permanent implant. After the reconstruction process, which takes several months, Stronach could have the pigment of her nipple replicated through medical tattooing.
Although confident in her decision to have a mastectomy, Stronach was hesitant about the idea of a tattooed nipple.
“I just felt that … why do you have to remove my nipple if the cancer isn’t in it?”
She voiced her concerns to her radiation oncologist, who told her about a California plastic surgeon who could offer another option.
Dr. Randy Sherman, now vicechair of surgery at Cedars Sinai Medical Center in Los Angeles, performs a single-stage procedure that combines a mastectomy and reconstruction and keeps the skin and nipples intact.
Medical experts don’t yet know the long-term safety of this relatively new procedure. A major concern is that sparing the nipple has potential for the cancer to recur, although some short-term studies have showed promising results with no cancer recurrences within at least two years after surgery.
The doctor told Stronach they would Reporter Thandi Fletcher is a recipient of the Michelle Lang Fellowship, created in 2010 to honour Michelle Lang, an award-winning journalist who died on assignment in Afghanistan. Over the course of a year working for Postmedia News and the Calgary Herald, the fellowship candidate develops a project addressing the goals Lang aspired to: telling stories that have gone unreported or unnoticed on topics of social significance.
“I embarked on this series to hopefully raise public awareness,” Fletcher writes. “If a politician becomes a champion for the cause, or if a woman with cancer learns about reconstruction before ever having a mastectomy — that would be an added bonus.” test her nipple while she was in surgery; if no DCIS cells were found, then they wouldn’t remove it.
Stronach raised the idea with her Canadian surgeon. “He wouldn’t entertain the possibility of doing that,” she recalled.
Stronach decided to have the surgery in California.
“It would have been a much greater challenge for me psychologically had I not had the reconstruction and had I not had a nipple-sparing mastectomy,” she said. “It’s a tough thing to deal with.”
Breasts are an important “part of being a woman and how you feel about yourself,” said Stronach, and being able to keep her nipple made the thought of losing her breast easier to process.
“It wasn’t a complete disfigurement,” she said. “It’s a pretty normal-looking breast.”
While in Los Angeles recovering from the surgery, Stronach was approached by Toronto family physician Dr. Marla Shapiro, best known as a medical consultant for CTV News and a columnist for the Globe and Mail.
Shapiro, who had also fought breast cancer, wanted to establish Toronto as a centre of excellence in breast reconstruction. She asked Stronach, a known philanthropist, if she would help fund an academic chair in Canada, unaware that Stronach had just had a mastectomy.
“Marla had no idea,” said Stronach. “Life takes strange twists and turns sometimes.”
When Shapiro proposed the idea of an academic chair in breast reconstruction in 2006, fewer than 10 per cent of women who had mastectomies also had reconstruction. And the wait for surgery was “horrible.”
“Way too long!” Shapiro said. “And it’s inexcusable, because this is a funded procedure.”
Shapiro approached banks and charities to secure funding for the chair.
Although there was interest, Shapiro faced some criticism from people who assumed reconstruction is a cosmetic procedure.
“This is not about getting larger boobs,” she said. “This is about healing with dignity.”
Although her breasts had never defined her, Shapiro said she couldn’t “help but be defined by the loss of them.”
“You’ve lost your nipples and all you have is skin without any landmarks at all,” she said.
The option of reconstruction allowed her to “get up and get dressed and be normal, and not have to be confronted by the mutilating scars on my body every day.”
The Belinda Stronach Chair in Breast Cancer Reconstructive Surgery was created at Toronto General Hospital in November 2007.
Although it has been almost five years since the chair was announced, no one has been appointed to the position, which Shapiro described as “frustrating.”
The delay is due to funding, said Tennys Hanson, president and CEO of the Toronto General and Western Hospital Foundation. When the chair was announced, only half of the $2-million funding had been raised. In an email, Hanson said that funding is expected to be in place by December 2012.
But the slow start doesn’t mean the money is sitting idle. As the endowment fund grows, the expendable portion is being used for breast reconstruction research and patient education, said Dr. Stefan Hofer, head of the Breast Restoration Program at Toronto’s University Health Network, which is overseeing how the money is allocated.
Although launching the chair is a step forward, Stronach and Shapiro say women face far too many hurdles for reconstruction.
Stronach believes people need to bring more attention to the problem before government will address it. “It will become a priority for politicians when it matters to citizens,” said Stronach. “We have to demand this. The citizens have to be vocal about it.”
But without knowing the problem exists, Shapiro said nobody will raise their voices.
“We need to be doing more,” said Shapiro. “It’s as simple as that.”
SATURDAY: Some women languishing years on wait lists For more on this series online edmontonjournal.com/ battles cars