Printer-friendly versionIn Search of Woman-centred Health Care
by Laurie Potovsky-Beachell
Last Valentine's Day, I entered a select sisterhood -- I became one of the one in nine women who will be diagnosed with breast cancer at some point in their lives.
A week before, I'd had a biopsy to remove what I thought was a cyst. It all started with a few suspicious specks on my annual mammogram the previous June. My family doctor said that this kind of calcification was usually nothing to worry about. But just to be on the safe side -- since my sister had been diagnosed with breast cancer two years earlier -- she arranged an appointment for me at a breast clinic.
The needle biopsy took five painless minutes. A few weeks later, however, a painful lump developed near the aspiration site. I wasn't worried -- I was sure I'd be notified if anything was seriously wrong. So, I waited for a routine follow-up check five months later. At that point, a surgical biopsy was scheduled.
After the biopsy, the surgeon chatted casually with me as she removed my stitches. Once I was dressed, she said she'd go over the pathologist's report with me. That's how I learned I had cancer. I sat listening to her words, struggling with disbelief. She reassured me that in women my age -- there are small advantages to being over 50 -- this type of cancer is not particularly aggressive. She talked about the surgical options: lumpectomy or mastectomy. Some choice! It was impossible to concentrate -- my thoughts kept wandering to my sister.
The doctor scribbled in situ and infiltrating ductal carcinoma, grade one on the piece of paper. She said she always put the diagnosis in writing because patients seldom remembered it.
The nurse had a stack of material ready for me. There was a five-booklet series on breast cancer, a pamphlet on diet and nutrition, a sheet with a list of other resources and another with the names of women I could contact if I felt the need.
I devoured those books. In the volume covering breast disease I found statistics that said the prognosis for infiltrating ductal carcinoma wasn't very positive. But it was published in 1988, so I looked for newer information. Dr. Susan Love's Breast Book (1995 revised edition), a tome nearly three inches thick, became my bible.
It gave me clear and concise explanations, with illustrations, of the types and stages of cancer, as well as current lumpectomy and mastectomy techniques. It explained axillary dissection and side effects such as lymphadema. It laid out what was involved in radiation, chemotherapy and hormone therapies. Through all of it ran a continuous thread encouraging women to include themselves on their medical team.
It's impossible not to be totally preoccupied with breast cancer when you have it. Reading, learning, considering treatments, telling family and friends, seeking support and advice -- the subject is inescapable and all-pervasive. I grew all too familiar with the medical jargon. There was great comfort in knowing that my family and friends were holding me close in their thoughts. My sister's experience and the witness of friends who'd also been through it were sources of enormous support. Memories of an absent friend, claimed by the disease, haunted me.
My husband offered his support from the very first. He went with me for the next consultation. The surgeon was patient with our questions and straightforward about procedures and treatments after surgery. I chose lumpectomy. Even radiation, lumpectomy's requisite companion, seemed preferable to losing my breast. But the choice was not anxiety-free. In the back of my mind, I knew that my sister's lumpectomy had been followed a week later by a mastectomy. The tissue that had been removed had not shown "clean margins" under the pathologist's microscope.
I went home the day after my surgery with minimal dressings and no exterior stitches. My left arm was barely stiff from the axillary node dissection. All signs were encouraging and I felt optimistic. The clinic had arranged plenty of post-surgery support -- a physiotherapist, a social worker, a nurse doing research, a volunteer from Reach to Recovery.
But what I really longed for was an "all clear" from the pathology report. When two business days stretched to nearly a week, my anxiety level went right over the top. Finally, the surgeon called with the long-awaited report. The good news was that my lymph nodes were clear. The bad news was that I was to follow my sister's path. With that, it seemed like all efforts to think positive and stay in control were pointless. I cried for hours.
Once again, I faced options. While I vacillated between another lumpectomy and a mastectomy, consultations were arranged with a plastic surgeon, a medical oncologist and a radiologist. My surgeon said: "Doctor X won't like those 'dirty' margins. Tell him I haven't finished you yet." All consultations would take place in the three-week period I'd have to wait for another surgery.
Lumpectomy again seemed preferable, but another poor result would mean more surgery. Mastectomy would be simpler. Trying to reassure me, my husband said he'd love me with one breast or two. I tried to explain that my reluctance was not purely cosmetic. My dreams became replays of memories encoded in breast tissue. Family and friends showered me with caring concern; yet, I sensed their unstated consensus for mastectomy.
All of southern Manitoba was digging out of a terrible April blizzard as my husband drove me to my appointment with the radiologist in Winnipeg. I'd nearly cancelled it, almost resigned to mastectomy. My breast had begun to drain that morning, an added indignity.
When I delivered the surgeon's message to the radiologist, he gave a short laugh, then cited a study in which radiation was shown to be just as successful on women without clean margins. According to him, more surgery was unnecessary and mastectomy was too drastic.
Two days later, still revelling in my deliverance, I saw the medical oncologist. He agreed with the radiologist but added Tamoxifen to my treatment. Tamoxifen is a hormone therapy that has been linked to endometrial cancer as a side effect. My annual Pap smear would be critical and endometrial biopsy an eventuality if any unusual changes were to develop.
So there I was, in a classic conundrum. Conflicting recommendations favoured individual medical specialties. My relief turned into uncertainty and fear. Had these doctors read all of the pathology report? Had I asked the right questions in consultation? Were essential details missing? This piecemeal approach robbed me of the confidence I needed to be part of my medical team.
I'm lucky -- my cancer was discovered early. I'm not ungrateful for the excellent medical expertise available to me. Unfortunately, it will be needed by growing numbers of women. But I'm not satisfied. The reality is that we lack good women-centred care.
Dr. Love advocates a multidisciplinary approach in which women with breast cancer consult with a team of specialists in a single day's session. This enables them to establish their course of treatment without delay. I asked my surgeon why this approach wasn't used in Winnipeg. Apparently it is, but to a very limited degree, and exclusively through the Cancer Clinic at St. Boniface Hospital.
It is well past time for such a multidisciplinary approach to become widely accessible. Had it been, I would have been spared those extra weeks agonizing over more surgery. I wouldn't have worried whether my charts had been thoroughly understood by all of the specialists.
It wouldn't have taken three weeks after surgery to see the radiologist; which translated into a nearly three-month wait for radiotherapy after surgery. Finally, I would have started Tamoxifen immediately, rather than waiting a week to hear if the surgeon had further compelling reasons for recommending more surgery.
Some evidence has linked stress to contributing to breast cancer. It is a frustrating irony that, after diagnosis, stress becomes an immediate and constant companion -- mainly due to the way our health care system is organized. Research shows that involvement in a breast cancer support group improves the quality of a woman's life and significantly lengthens her survival.
Women with breast cancer need supportive and well-coordinated diagnostic and treatment services. These are essential to give women some control in a difficult situation and help them make appropriate, timely decisions about their care. Using a team approach would go a long way toward lessening the burdens carried by women as they endure diagnosis and treatment for this disease.
Laurie Potovsky-Beachell lives in Rosser, Manitoba. A writer, she is currently Women's Health Issues Advocate for the Manitoba Women's Institute and a member of the Women and Health Reform Working Group, a coalition working to ensure that women are included in current health reform initiatives. Another version of this article previously appeared in the Summer/Fall issue of Womanly Times, the newsletter of the Women's Health Clinic in Winnipeg.