On a September morning, five days before surgery to remove her cancer, Virginia Yule saw her seven-year-old son, Alex, off to school, made a cup of tea and began typing a letter on her computer — to her doctor.
“There are a couple of things I would like to share with you,” she wrote, “which may help us decide how we are going to tackle this nasty stuff.”
She went on to tell her surgeon about Alex, her only child. He needs me, she explained, for at least four more years. He has to fix his table manners.
“After that, there is sex,” she wrote — she had to be there for those talks, “because his father is crazy!”
Then she needed to see him off to university. And later, to hold her first grandchild. “So you see, I have to beat this,” she declared. “And I will.”
Ms. Yule did not want to be another anonymous breast lying on the operating table. She had met her surgeon only twice, for a total of 45 minutes — to learn she needed a biopsy after a mammogram found a shadow on her breast, and then to be told she had cancer.
So she wrote the letter.
“I really wanted her to know who I was,” she says now, cancer-free for seven years. “I needed her to treat me like I was the best patient she had ever operated on, and I was going to be her biggest success story. And I needed to give her a reason. So my reason was that I had a seven-year-old son with terrible table manners.”
Ms. Yule was then 49, living in a country home in Caledon, Ont., and running a family business with her brother, selling birdfeeders.
With its forthright and chatty tone, her letter, faxed off to the doctor's office the morning she finished it, defined how she saw herself as a patient — equal, informed and with an identity beyond the tumour in her breast.
While expressing respect for her doctor's skills, she also wrote that she planned to call her surgeon by her first name, because “we are sharing such an intimate part of my life.” She concluded: “I have the utmost confidence in you, and I hope to earn yours too.”
Ms. Yule's desire to be seen as a person is a common complaint among cancer patients caught in a system that seems overwhelmed by waiting lists and swamped by test results, where phone calls tunnel through to voice mail and a busy doctor may have mere minutes to explain the most complicated, heart-stopping medical information.
Lynda Coghill recalls how her doctor barely spared a few seconds to deliver a curt death sentence. The Newmarket, Ont., school teacher was diagnosed with ovarian cancer at 39. At an appointment after surgery and radiation, she told her oncologist she was still bleeding. He did a quick exam, announced she had a new tumour, and said bluntly: “Your chances are slim to none.” He told her to wait a few weeks for the results of a biopsy, then left to treat a patient down the hall.
“I looked at the nurse in sheer disbelief,” Ms. Coghill says. “The doctor had proceeded to tell me, in less than 30 seconds, that I was going to die. He didn't seem to care that I had three small children.”
She cried for days, unable to eat or sleep. She and her husband planned her funeral. At last, she contacted the sympathetic nurse from the doctor's office and persuaded her to call for an “unofficial” biopsy report. The tumour was benign. Eight years later, Ms. Coghill remains angry about having been treated “like a numbered object on an assembly line.”
To get the best care, patient advocates say, it's not enough to wait passively in an appointment room. You have to go out and get it.
On diagnosis, the modern patient scrambles to the Internet for an instant briefing, collects copies of their CT scans and learns the direct line to the doctor's office. Many have created their own online blogs to chart their cancer experience and trade information with people in similar situations.
