My Mother's Story
During the last five years of my mother's life, she fought a mean, possibly mutant, 20-year-old breast cancer. She had just gotten off the drug tamoxifen when this new cancer appeared. She had gained 10 pounds while on tamoxifen to treat a second cancer and wanted off.
My petite mother, Evelyn M. Dee, had a will of iron and was eager to get on with her life cancer-free.
I thought my mother's story of how a first cancer can come back with a vengeance after 20 years, even as a second cancer is being successfully treated, was important to tell. I wasn't sure if her story was medically remarkable or remarkable because she was my mother.
After speaking to the doctors who treated her, I better understood a few things. Back in 1977, when my mother's first cancer was diagnosed, it was the Stone Age of breast cancer research and treatment. She had a radical mastectomy and radiation but not chemotherapy.
Her second cancer in 2000 was isolated in her remaining breast. This intraductal carcinoma in situ – doctors refer to it as DCIS – is the earliest form of breast cancer. Her doctor treated this pre-malignant lesion with tamoxifen and radiation.
When my mother was diagnosed in 2006 with metastatic cancer you could say her case was remarkable – and incredibly unfortunate.
"The tamoxifen may have held it back. Or it was resistant to tamoxifen or it had mutated and decided it was going to grow without restraint,”said Dr. John Niedzwicki, who began treating my mother in 2000 at the Hawthorn Medical Center in Dartmouth, Mass. “Sometimes it's just bad luck and the will of God," he said. My mother died at 9:30 a.m. on May 31, 2011.
My mother had told all four of her children in 1977 that she was having surgery because she had found a lump in her right breast. Then, in typical fashion, she added not to worry, everything would be fine.
I was terrified to see her lying in a hospital bed attached to tubes. I had never seen her sick before. But she minimized her pain and fear when she woke up from surgery by asking if she would still be able to golf. She had recently started playing and was getting very good at it.
The image that stayed with me is of her after she came home from the hospital. She was sitting in a patch of sunlight in her backyard. Her head was drooped on her chest. Later on she would ask me to help her shave under her right arm as the area was numb and she had a hard time reaching it. We would stand before her bedroom mirror, she shirtless and me trying not to embarrass her – or upset myself – by looking at her scarred chest.
As the years went by, life returned to normal. My mother’s life revolved around her golf game and the “ladies” she played with at the country club. As a breast cancer survivor, my mother pinned pink ribbons on her golf visors. She participated in races for The Cure.
She approached her second cancer, the DCIS, in a similar fashion as she did her first, by focusing on the positive and remaining hopeful. And she was extremely fortunate to have doctors with access to the latest research and drugs.
“I think her case illustrates the progress we made treating a very bad disease by virtue of the number of things we had for her,” Niedzwicki said. “She had many new treatments.” The new treatments gave my mother time – five more years with family and friends that she wouldn’t have wanted to miss. “Five years is very good with a very advanced disease. I consider it a victory,” Niedzwicki said. “She managed to enjoy life and have a stiff upper lip. A lot of time we’re fighting a losing battle but we were able to help her quite a bit.”
If my mother had been diagnosed with advanced breast cancer five years earlier, she might not have lived three years, Niedzwicki said. That is how fast breast cancer research and treatment is changing. “We are learning to do things better,” he said.
In addition to receiving care from Dr. Niedzwicki, my mother leaned heavily on her niece, Dr. Marcia Browne, an oncologist at Newton-Wellesley Hospital in Newton, Mass., and Marcia’s husband, Dr. Jeffrey Clark, director of the Clinical Trials Core, Dana-Farber/Partners Cancer Care at Massachusetts General Hospital.
The first challenge they faced in 2006 was determining where the new cancer had originated. My mother had lumps in her lungs and cancer cells in the lining of her lungs. Was it possible she had lung cancer?
Marcia made an appointment at Mass General with one of the world’s leading lung cancer specialists, Dr. Thomas J. Lynch, Jr. At the time, Lynch was chief of hematology/oncology at the hospital's cancer center. He was named director of Yale Cancer Center and physician-in-chief of the Smilow Cancer Hospital at Yale-New Haven in 2009.
“I wanted to do something important in medicine, and I don't think any event is more profound than receiving a diagnosis of a dreaded disease-like cancer," Lynch said.
As people survive longer with cancer, it becomes harder to pinpoint where their cancer originated, Lynch said. Finding a cancer’s origin is important because it helps determine how to treat it.
“To do this you look at the clinical profile, how the clinical profile develops, where does the cancer present, and where are the spots. Then you view stains under a microscope and do a molecular analysis,” Lynch said. “There are a lot of differences in the pathways activated by different cancers.”
Lynch traced the cells back to my mother’s first breast cancer. Even though the cancer had spread to her lungs and bones, this was a good report. Lung cancer patients average one year to live. Doctors have more options for treating breast cancer. “She had a very aggressive cancer. Dr. Lynch did a real good job sorting this out and figuring out this was a breast cancer. At least this put her on the right track,” Niedzwicki said.
Lynch has worked with pioneering groups that have looked at molecular profiles for patients who can then be treated with targeted therapies. “We treat patients based on a genetic understanding of their cancer,” he said. “Cancer is driven by genes that are abnormal, and groups of genes that are abnormal. We know cancer is caused by an imbalance in the signals in a cell telling the cell to grow or to die. The cell has all these pro-growth and anti-death signals, so if you can find out what genes are telling a cell to grow or not to die, you can focus on those genes.”
Once the genetic mechanisms are analyzed, the question then becomes one of how to get better outcomes with medicine. Lynch’s proclivity for finding life-saving treatments came from watching his father, one of the country’s first generation of hematologists/oncologists. Watching his father, Lynch said that he was struck by the challenges of cancer research and “the profound importance of it to people.” He added, “I like the fact that we’re finding new science all the time. The science is evolving, the treatments are changing.”
The chemotherapy administered to patients in 1977 was broadly diffused and non-specific, he said. “It killed more cancer because those cells divided more often. Now treatments are targeted to the cancer cell. They take advantage of the abnormal gene pathway. The problem is you don’t have enough good drugs.” Drugs are plentiful for some kinds of cancer but not for others. “We’ve done great things for HER2 breast cancer and ALK mutations in lung cancer. But other lung, colon and pancreatic cancer drugs still have a ways to go,” Lynch said.
My mother benefited from several new drugs. Unfortunately, one of them almost killed her.
In September 2009 while taking the oral chemotherapy pill xeloda, my ever-stoic, uncomplaining mother let her diarrhea go on for too long before calling Dr. Niedzwicki. By the time she was admitted to the intensive care unit, my mother was so malnourished that she was close to dying. She stayed for a full week of treatment in the ICU. “I went with a modest dose (of xeloda), but with that pill you have to be careful,” Niedzwicki said.
Released from the ICU, my mother began planning for Thanksgiving as she had always done. While she was in the kitchen cooking, she had a seizure. At first, it appeared that she had a bleed in her brain, but an MRI performed at Mass General showed that she had cancer on the lining of her brain. She was treated with radiation.
“She had a couple of bad things – a lot of bone disease and intestinal obstructions – which is one of the worst ways to end up. When you can’t eat and your gut is painful, it’s just awful,” Niedzwicki said. “We don’t see that too often.”
She responded well to another new drug, ixabepilone, from December 2009 to July 2010. The cancer had spread to her liver and the lesions were worsening. In August 2010 my mother called to say her treatment options were running out and she might have to consider hospice. But she was not ready to stop fighting and the next thing I knew she was back on chemotherapy.
When a short course of a new drug, gemcitabine, didn’t work, Niedzwicki tried an old drug in a novel way by giving her low doses of the toxic drug adriamycin once a week. “It was Marcia’s idea. We were out of options,” Niedzwicki said. “But then we came in with halaven.”
My mother was only the second person Niedzwicki treated with halaven, a new chemotherapy infusion that she began receiving in January 2011. Halavan extended her life by several months.
“She is an example of someone who had so much fight that I was able to try everything. Not everything worked, but we got a lot of mileage out of it,” Niedzwicki said.
“One of the things we think is very important in cancer care is that it is patient and family centered,” Lynch said. “It affects families profoundly.” But while Lynch understands the importance of having a positive attitude when fighting cancer or supporting someone who has cancer, he acknowledges that the progression of the disease is out of our hands. “The thing is, patients want to think they can control things and they can’t,” he emphasized.
With access the newest drugs and exceptional health care, my mother survived five years after her diagnosis. But there is a flip side to her story. “The people who die because they have a more aggressive cancer feel like they are at fault because they didn’t fight hard enough,” Lynch said. “Every patient I encounter has an innate will to live. Everyone is striving to live.”
Lynch stressed that the reason some people live a long time with cancer is because their cancer allows them to. “People who die in eight months die because their cancers are more severe,” he said. The belief that patients can will themselves to be well “puts incredible pressure on the people who die,” he said.
At Smilow, Lynch and his team of researchers continue to work on molecular profiling, working on a project with Gilead pharmaceuticals for more precise lung cancer treatments. And he continues to focus on family-centric care. “I want Smilow to be the very best cancer center for discovery and treatment for people with cancer.”
Last year, when I interviewed RuthAnn Lobo for our cover story, I asked her about the importance of having a positive outlook. People with cancer don’t have much of a choice, she replied.
I would say the same for those of us who are grieving for loved ones who have died of cancer. Four-and-a-half months after my mother died, the numbness that I initially felt has worn off. The realization that she is gone hits me in the gut every time. But I have no choice but to accept it.
“No matter what she was going through she never complained,” Niedzwicki said. “I remember her as a very refined woman who put up with everything and was willing to try anything – who had a strong will to live.”
Jane E. Dee is the Special Publications Editor for CT1 Media.Copyright © 2014, The Baltimore Sun