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It's something almost every woman fears — a lump in the breast that turns out to be cancer. A devastating diagnosis to be sure, but breast cancer isn't what it was even 20 years ago. With greater awareness, early detection and advances in treatment, survival rates are on the rise. Survivors will tell you, there is life after the lump.
Sharing lessons learned
Married with a grown daughter, Deborah J. Cornwall was 55, healthy and fit, a primary partner in a small consulting firm with no family history of breast cancer. She was an active volunteer for the American Cancer Society and the Cancer Action Network in the Boston area where she lives.
As the world shook with the events of Sept. 11, Cornwall's personal world crumbled when the calcification — “a little white spot” — her doctor was tracking turned out to be breast cancer.
After a regular mammogram showed something the doctors wanted a closer look at, she was called back for reshoots and later an ultrasound.
“At first I was aggravated because I would get home from work and get the message to call radiology. But at that time of night, I couldn't speak to anyone,” Cornwall said. Follow-ups sometimes took as long as three weeks, making Cornwall more and more anxious.
When the call finally came, Cornwall was “furious” when her primary care physician phoned to say, “I'm just calling to say you have cancer.” The doctor “was cheery, so casual, but I learned later there is no good way to tell someone they have cancer.”
Cornwall said she “is one of the lucky ones” and that hers was only a “brush with cancer.” In the end “all the cancer came out in the biopsy,” but she did undergo 35 days of radiation and took Tamoxifen for five years.
The process from diagnosis to treatment and eventually to becoming cancer-free redefined what really matters in life, Cornwall said. She continues to volunteer with various cancer causes including the AstraZeneca Hope Lodge in Boston, a facility that offers lodging for those receiving care at Boston medical centers.
The stories she heard through her volunteer work resulted in a book published a year ago, “Things I Wish I'd Known.” The book blends caregivers' stories, factual information and practical guidance.
Some lessons learned:
- “First, take a deep breath. Look around and make sure you find the support you need,” Cornwall said. Which leads directly to her second lesson: Surround yourself with a great medical team.
“Every hospital is claiming to be a world-class cancer center, but they are not all equally competent. You want to choose a hospital that specializes in the type of cancer that you have,” Cornwall said.
- To find the best medical team, look at the hospital or cancer center's certification. If possible, Cornwall urged, seek a hospital with certification from the National Cancer Institute or the American Society of Clinical Oncology, which is called the Quality Oncology Practice Initiative.
- It's also critical that your oncologist is trained in palliative care “to treat your quality of life, pain control, nausea control and anxiety relief,” Cornwall said. “Not every oncologist is trained in palliative care; be sure to check.”
And when you schedule those first appointments, don't go alone. “When you hear the C word, something happens to your mind. If possible, bring along a caregiver to hold your hand and take notes,” Cornwall said.
- To take care of your personal well-being, “engage in a support group,” Cornwall said. The word “cancer” is almost taboo, she said. “When you start down this road, most people don't realize how isolating it is. ... You don't realize how alone you will feel,” Cornwall said.
'It wasn't a matter of 'if''
Cynthia Bolanowski's mother hated doctors, and so her diagnosis of breast cancer came too late. Her mother passed away in spring 1952 at age 36.
“I was 4 1/2. Somehow I felt that this would become my fate as well; it wasn't a matter of 'if,' it was a matter of 'when,' ” said Bolanowski, who lives in the Chicago suburbs. “Through the years I diligently scheduled exams and annual mammograms and did self-exams, with the only result being a benign cyst now and then.”
Fate came knocking in spring 2007.
“I felt a lump in my right breast unlike the previous cysts I had experienced. My scheduled appointment was within a few weeks, so I just waited. My doctor felt it, too, but assured me that the majority of these lumps were nothing to worry about,” Bolanowski said.
In hindsight, Bolanowski looks back on the medical experience with a different perspective.
“This is the same man who had put me on hormone replacement therapy medication even though I questioned its safety due to my family history,” she said. Going through a divorce and menopause simultaneously, Bolanowski went along with his advice but now feels it wasn't the best choice for her.
On her 60th birthday, a letter arrived along with many greeting cards. There was a suspicious lump that needed further inspection. The next few weeks were a blur.
Approaching the ordeal with a positive attitude, a sense of humor and a will to fight helped her get through the tough times.
“Attitude helps a great deal. You need to be surrounded by positive people,” she said. Especially helpful is talking with others who are going through the same treatment so you can identify with each other's journeys, Bolanowski said.
“Funny thing … I never cried. I always knew I would be just fine.”
Six years have gone by since the diagnosis. Five years of follow-up medication ended in March.
In June, Bolanowski complied with her daughters' request to have genetic tests for the BRCA1 and BRCA2 genes. “They wanted to know rather than live their lives as I did, thinking that it would just be a matter of time.”