Anne Parker is a remarkable person, one of the first cancer patients in North America to have learned she carries a BRCA gene mutation. Parker’s mother died from cancer in the 1960s, and her sister in 1978. Her story forms one of the two main threads in the movie, Decoding Annie Parker.
Parker recently celebrated her 64th birthday. She lives with her husband near Toronto. After treatment for three cancers, she works as a sales manager for a conference center in Mississauga, Ontario.
Her book, Annie Parker Decoded, offers a first-hand account of the story behind the film. After she found a malignant breast lump in 1980 and doctors diagnosed ovarian cancer in 1987 she, with just a high school education, became determined to understand her family’s cancer disposition.
At a time when few physicians thought that there was a genetic cause of breast cancer, Parker sought information and pushed her doctors for answers. Her perspective on oncology – as a family member, patient and advocate – spans over 50 years.
Recently we spoke about her experiences, and how cancer care has changed since the 1960s:
What do you know about your mother’s cancer diagnosis and treatment?
Parker: I didn’t know much about my mother’s cancer until after she died in 1965. I was 14 years old.
We were a very happy, middle-class family. There was never any conversation about cancer in our home. Nothing was discussed. My dad always said ‘whatever happened between the walls of our house stayed there,’ within our house.
I found out later my mom had cancer when she was carrying me. She chose not to have any treatment until after I was born in 1951. She had a complete mastectomy on the left side and Cobalt treatments. I know this because I saw the scars. It was traumatic for me, when I saw my grandmother putting salves on her radiation burns.
My sister Joanie had more of a clue. It was she who explained to me that my mom had breast cancer. She was older and became a nurse before she died.
What do you recall about your sister’s breast cancer diagnosis and treatment?
Joanie passed away in 1978. She was in her late thirties. Looking back, I think she and my brother Doug, who is four years older, kept a lot of information from me. I was in my twenties. They were trying to protect me, to keep me from worrying.
My sister had a right radical mastectomy around 1976. The doctors told us she died from cancer in the colon. In retrospect, we think she might have had advanced ovarian cancer that spread.
Reconstruction was just becoming the thing to do in 1978. She was considering that, and consulted a surgeon. But then they found the cancer again.
Can you tell me about your first cancer diagnosis and treatment?
Parker: I was 29 years old when I noted the lump in 1980. I was a hypochondriac, especially after my sister died. I was in the shower one day and doing self-examination which I conducted daily, when I found it. The lump wasn’t very big, just pea-sized, on the left.
I signed up for bilateral mastectomies. It was the very first time I heard the doctors refer to my family history. My GP (general practitioner) said ‘because your mom and your sister passed from breast cancer, maybe we should remove your right breast too.’ I bled a lot during the surgery, and they ended up just removing the left.
It was stage I. The cancer had not spread to the lymph nodes. They said ‘we got it all.’ I didn’t get radiation or chemo.
I didn’t have reconstruction. I guess I didn’t want to have more surgery. It could be that they were worried about a recurrence, but I’m not sure.
What do you see as the most important change in the experience of having cancer since the 1970s?
Parker: People may be afraid and worry about death when they hear the word cancer, but they talk about it now.
They’re empowered and encouraged to ask questions. Today it’s normal for patients speak with their doctors to figure out the best regimen for what they have. You feel like you’re working together as a team.
I’m not proud of it, but I barely got through high school. Nonetheless I’ve become highly educated about my medical problems. It helps keep me sane and gives me a sense of control over my destiny.
How have doctor-patient relationships changed since 1980?
Parker: Doctors today are more open.
Back in the 1980s, in my first experience as a patient, I always sat on the other side of the doctor’s desk. I always felt small. What the doctors said was gospel.
We’ve come a long way. Patients are participating more, and questioning doctor’s words.
What about your second cancer diagnosis?
Parker: In 1987 I was having symptoms that turned out to be from ovarian cancer.
The diagnosis took a while. I was having problems with my periods, painful intercourse and bloating. I was tired, and had lots of nausea without vomiting. My GP (general practitioner) thought it was just from a lot of stress in my life. My husband and I had been separated and were going through a divorce. There were issues with my son, and where he should go to school, and so I couldn’t move far.
My GP said all these emotional things contributed to my physical condition. That’s when I started getting more proactive. I went for a second opinion in October 1987, to see a gynecologist. She checked me in to the hospital, arranged for a lot of tests, including some with scopes under anesthesia, and found stage 3 ovarian cancer.
Before I knew of the diagnosis I called my husband, with whom I was living at that time. ‘Just tell me it’s not cancer,’ I said to Michael. But the doctors advised him not to tell me. I can’t blame him. They were medical professionals, and they told him not to tell me.
Oddly enough there was a psychiatrist there when they told me about the ovarian cancer. I was an emotional wreck. I had this cancerphobia for so many years.
In 1988 I received cisplatin and cyclophosphamide, alternating with carboplatin chemotherapy. It was horrible, heavy duty stuff. I’d take one dose of chemo in the hospital, and the second dose out of hospital. I vomited constantly, and lost 40 pounds, so I weighed about 80 pounds.
I was afraid of dying. I was supposed to have 12 rounds of chemo, but they stopped after nine or ten cycles. They did a second-look procedure. It was barbaric. They opened me up from the pubic area, up to where I had the mastectomy and took snippets of all my major organs to see if they could find cancer.
I was never, never so sick. I had infections and dehydration. I had abdominal pain and diarrhea. I lost my hair. I had mouth sores, so it hurt to swallow. I lived on ice cream and mashed potatoes. I neuropathy and could barely stand on my feet. I could not drive. My hands were numb.
It was a bad time. After that, I was followed closely with yearly checkups.
What about your third cancer?
Parker: In 2006 I noticed some back pain when I exercised or walk for any length of time. They picked up a shadow behind the liver. They removed part of the liver and found cancer. They labeled it as and ‘unknown primary,’ probably having to do with my BRCA mutation.
For that cancer, I received taxol and carboplatin. The drugs were given every three weeks for six cycles. That chemo was a walk in the park, by comparison to the treatments earlier on. I received them as an outpatient. They were strong drugs, though. I did lose my hair. I became anemic, and I needed a medicine to support the white blood cells.
During treatment for the third cancer, I felt human. The anti-nausea drugs helped a lot. There was better pain management. I was able to take a day off and then get right back to work. Somehow I was able to continue on my ordinary routine.
How has peer support for patients changed since the time of your first cancer diagnosis?
Parker: When my mother was diagnosed with cancer, it was a family affair.
My father had nowhere to turn. My father became a recluse. He provided for us financially, but he hardly spoke.
The same was true for me, at the time of my first diagnosis in 1980. A woman came from the Canadian Cancer Society and helped me with my hair. I was losing my hair, and afraid to brush it because I didn’t want to face the reality of being bald. She brushed it for me ant put a scarf on my head, but that was about it.
Today there is more help in communities for patients during treatment, and after the loss of a loved one.
What about Internet support. Does that have real value?
Parker: Having information is valuable. Whether the communities are real or on-line, the goal is the same. I don’t think one is better than the other, necessarily.
Do you see anything that’s less good about cancer care today?
Parker: In my experience, no. My cancer care has been excellent. Dr. Ellen Warner at Sunnybrook Health Sciences Centre has saved my life more than once.
But I do hear from young people who complain. Doctors don’t have a lot of time, and that can be frustrating. With so much technology, you’d think there’d be more progress. The doctors spend less time on physical exams and they seem to be more rushed, maybe because patients come in with questions.
In general it’s much better. It’s nice that now I can access part of my chart.
Also, many patients get more personalized attention having to do with the specifics of their case.
Do you have any advice for patients now, with hereditary cancers or otherwise?
Parker: Ask questions, that’s all I’ve ever tried to do since day one. My advice is be involved in your care, dot your i’s and cross your t’s. Take control. And talk with other patients. They can help you.
