TWO SISTERS, TWO CANCERS
ONE SUNNY SATURDAY morning two years ago, my phone rang as I was walking out to my garden with my coffee and paper. It was my big sister, Karen, from California. “You’re not going to believe this,” she said. “I’ve just found out I have breast cancer.”
Unfortunately, I didn’t have any trouble believing it. Not because of the statistics: about 26,000 Canadian women and over 260,000 women in the United States were diagnosed with breast cancer in 2017. Or because Karen had already had cancer. The news didn’t surprise me because I have it, too.
Two sisters, two countries, two cancers. On the surface, our experiences were very similar: we both received excellent treatment, we had lots of support, and we’re recovering well. But there were some important differences.
MORE THAN HALF a million women around the world die of breast cancer every year, yet nobody knows for sure who will get it or why. Lots of environmental and lifestyle factors have been associated with higher risk: how much you exercise, what you eat, how much you weigh, how much alcohol you consume and whether you smoke or have had hormone replacement therapy. But the two most significant risk factors are simply being a woman and getting older.
Karen is 64, four years older than me. Her three children are grown, and she lives with her husband, John, in a small town outside Los Angeles. I live in Toronto and have children in their 20s, a new husband, Jim, and I run a communications business.
My sister survived a brain tumour when she was 37 and hasn’t worked since. But we’re both healthy and reasonably active. I have never smoked, and Karen stopped a few years ago. There’s no history of breast cancer in our family, and we’ve both tested negative for mutations in BRCA1 and BRCA2 genes that produce tumour suppressor proteins.
Every year, my doctor would give me a requisition for a mammogram, and every year, I’d find it crumpled at the bottom of my bag several months later. I was always too busy. I hadn’t had one since my first at age 50.
Things changed when I met Jim. I was happier and taking better care of myself, and so finally, at the age of 56, I took the time to go for my scan. The test showed a bit of calcification, and the radiologist thought it would be worth coming back for an ultrasound.
IT TOOK THE ultrasound and a second mammogram in early June 2015 to find two large masses in my right breast that not even my doctor had been able to feel. Together, the tumours were over six centimetres long. The technician brought in a radiologist, who explained that she was going to perform a biopsy on the spot. A few days later, I got the
call. It felt exactly like you’d expect— everything changed in an instant.
Several weeks later, an MRI revealed that the cancer was likely moving into my lymphatic system. My surgeon recommended a single mastectomy with a biopsy of my lymph nodes to see how far the cancer had spread, followed by chemo and radiation. Surgery was set for July 15.
The procedure went off without a hitch, and I recovered pretty quickly. About a month later, I was on the train to Montreal to speak at a conference. I wore a breast prosthetic, and nobody was any the wiser.
Chemo started in September, and the six treatments weren’t easy. I wasn’t nauseous, but during my last three treatments I had to immerse my fingers and toes in ice for excruciating 90minute intervals to prevent my nails from blackening and falling off. There were other side effects too: my body ached, I developed mouth sores and body rashes, and I shuffled when I walked thanks to weakened joints. During the worst of it, my legs were so swollen that none of my shoes or boots fit. KAREN’S EXPERIENCE was different in many ways. She was always more careful than I was. She’d been told she had dense breasts, so she went to a clinic every year for an ultrasound-guided mammogram. Her latest test in March 2016 had come back clear, but when she let the clinic know about my diagnosis, they asked her to come in for another mammogram, this time guided by MRI (magnetic resonance imaging). On May 11, they found a two-centimetre lump
“A TALL MAN IN A NICE SUIT TOLD US HE HAD TO HAVE A CHEQUE BEFORE THEY WOULD DO THE SURGERY,” SAID KAREN.
—exactly a year after they’d found mine. On the recommendation of the clinic, she opted for a lumpectomy with a simultaneous cosmetic reduction of the other breast.
The surgery was set for June 8, four weeks after her diagnosis. “Just as I was getting ready to head to the operating room, a tall man in a nice suit came in and told us he had to have a cheque before they would go ahead,” said Karen. “‘It’s our new policy because people aren’t paying their bills.’ We paid him, of course, but it seemed absolutely outrageous, especially when you’re frightened and sick.”
During the procedure, Karen’s doctor also removed some lymph nodes and found cancerous cells in one of them. “We had all been so sure it would be simple, because the tumour was so small,” she says. The oncologists recommended chemo and radiation, assuring her that a mastectomy wasn’t necessary.
Like me, Karen had six chemotherapy treatments, but her side effects weren’t as severe, and she didn’t have to put her nails in ice. “My body ached, my legs swelled near the end, and my nails were discoloured and sensitive. But I didn’t have mouth sores, and I never lost my appetite.” We both had 25 rounds of radiation, which was easy compared to the chemo.
DURING KAREN’S treatment, I found myself playing the role of big sister. We talked on the phone a lot. I read her medical reports and told her what to ask the doctors. We decided I would visit her when John was away on business, just before her fourth chemo treatment.
One morning, she pulled out a folder with her medical bills. As I flipped through the eight-centimetre pile of papers, I was astounded. She’d been to two hospitals and three clinics, but there were invoices from almost 50 different service providers—pathologists, imaging centres, radiologists, plastic surgeons, anaesthesia services, blood labs—people she didn’t know, asking for money for services she’d never heard of.
“The time and effort you have to put into trying to understand who’s billing you and why, and the stress of having
KAREN’S INSURANCE REPORT SHOWS THAT THE COMPANY WAS BILLED
US$450,000 FOR HER TREATMENT.
to negotiate with suppliers and the insurance company—all while you’re in crisis mode—is a real hardship,” said Karen, who found the process physically and emotionally exhausting. “I have to question everything, or I end up paying more than I owe. Can you imagine if you don’t speak English well? Or if you are totally incapacitated by your illness and don’t have help?”
Astonishingly, Karen’s insurance report shows that the gross amount billed to the company was just over US$450,000. Compare that to $46,893, the mean cost for two years of treatment for stage II cancer in Ontario
between 2005 and 2009, which is covered by health care.
Karen’s insurance company negotiated this $450,000 bill down to just under $150,000, and she ended up owing roughly $16,000 in deductibles ($14,500 for medical costs and $1,500 for prescriptions), plus two and a half years of premiums (roughly $7,500). That puts the total out of pocket for her cancer treatment at around $23,000. And that’s with health insurance.
IT’S BEEN OVER TWO years now since I finished my treatments, and I’m feeling great. My hair has grown in, my energy is back, and all my scans are clear. Karen completed her treatments about a year and a half ago and is still struggling with lack of energy and some depression, which is just part of the process. And that’s not the end of it. We’re both now taking Tamoxifen, a drug that blocks estrogen action in breast cells, which should reduce the risk of the cancer coming back by 75 to 80 per cent.
Comparing our experiences has reminded me of how lucky I am to be living in Canada. Karen and I both received great medical care, but Canada’s health-care system is simply more humane. I have access to excellent treatment whenever I need it and can focus on getting better instead of worrying about huge bills or fighting with service providers. The Canada Health Act says this is what every resident is entitled to, and it’s one of the things that make our country such a wonderful place to be.