This is a story my family has been following for some time now, and it's nice to be able to share. It's also not the first time my cousin's story has made the news: she was on CNN about a year ago when they did a piece on her struggle to obtain her very specific chemo drug after the manufacturer suddenly stopped making it. She was halfway through her regimen at the time, and there were no comparable alternatives available for her. Not long after that, the cancer drug shortage made big news and was the subject of legislation by the current administration requiring due notice by pharmaceutical companies when they want to stop producing life-saving products that are no longer bringing in big bucks for them. Anyway, I'm really, really proud of my cousin and her amazing activism. This article is from yesterday's Asbury Park Press:
The toughest choice: Turning to double mastectomies reflects a desire to regain control
An avid runner, hiker and rock climber, lawyer Susan Kennedy was the picture of high energy, optimism and good health.
“I had a job I loved, was athletic and ate a healthy diet full of whole grains, fruits and vegetables,” the 50-year-old Red Bank resident said.
She therefore assumed that “there was no way I could get breast cancer” even after feeling something suspicious while taking a shower in March 2011. “One day it wasn’t there and the next day it was,” she described of a lump in her left breast “that was so big you could feel it through my clothes.”
'Just a cyst'
“Like many people, though, I misinterpreted the statistics out there. There was no history of breast cancer in my family, so I wasn’t worried. I thought it was just a cyst,” Kennedy said. “But I was wrong.”
Kennedy underwent a core needle biopsy and, to her disbelief, was diagnosed with triple negative invasive ductal breast cancer, a less widespread variety that is defined by negative measures on all three key breast cancer descriptors — the estrogen receptor, progesterone receptor, and HER2/neu protein.
“While not uncommon, triple negative breast cancer occurs in only about 15 percent of all cases and is considered more dangerous than others in terms of its likelihood of recurrence and ability to recur in areas other than the breast, such as the lungs and liver,” said Dr. Debra Camal, medical director of the Breast Program at Meridian Cancer Care, said.
“If a patient’s cancer registers positive on any one of the three descriptors, there are specific medications available that can effectively treat that type of cancer,” she said. “But a triple negative diagnosis knocks out many commonly used oral medications and leaves you with a more narrow band of treatment options,” namely radiation and chemotherapy.
According to Camal, who treated Kennedy, “Susan opted for chemotherapy first to shrink the 5-centimeter tumor and increase our chances of being able to surgically remove it,” a strategy that proved successful. Despite the grueling rounds of chemotherapy Kennedy endured, “it shrunk Susan’s tumor to just 6 millimeters and her lymph nodes were clear,” Camal confirmed.
“The chemotherapy turned out to be very effective,” Kennedy said. “In addition, it gave me time to decide my next move.”
Her best option
For Kennedy, that next move was a double mastectomy, a somewhat controversial option that an increasing number of breast cancer patients — including high-profile celebrities such as actress Christina Applegate, TV personality Giuliana Rancic and comedian Wanda Sykes — are electing despite the fact that it’s not always medically required.
“As frightening and surreal as the experience was, I looked at the situation as a problem to solve and elected not to have a lumpectomy or a single mastectomy for a number of reasons, including medical studies which showed that a double mastectomy is the better choice for long-term survival if you have triple negative cancer and are diagnosed before age 50,” Kennedy explained.
Kennedy fit both of these criteria and was acutely aware that her type of cancer could likely recur and might not be as responsive to chemotherapy the second time around.
She also knew that a recurrence might not be detected by a mammogram due to her dense breast tissue.
“This meant I would need an MRI annually, which can often deliver false positives, a reality which would subsequently require me to endure uncomfortable biopsies on a regular basis as well as the emotional stress of worrying every time I felt something or got a mammogram,” Kennedy said.
“I had the ‘perfect storm’ of factors colliding and didn’t know if the storm was done with me yet,” she said. “Given my circumstances, I saw a double mastectomy as the best way to reduce the chance of the cancer recurring in the breast tissue and of ensuring my long-term survival.”
“Approximately 200,000 women in the U.S. are diagnosed with invasive breast cancer every year, and there’s a growing national trend toward women choosing double mastectomy,” Camal said.
While puzzling to many in the medical community, the doctor understands and supports the choice “as long as the decision isn’t made out of misinformation or fear.”
“In the end, it’s a choice that each person makes based on their wishes and lifestyle, one that can give them more control of the decision-making process and outcome,” Camal said.
Back to 'normal'
Since her procedure in October 2011, Kennedy is cancer-free and has enjoyed “getting back to my normal life” — working, walking her dog and spending time with her husband and family.
“I feel fine, I’m running again, and I feel stronger and stronger each month,” she said. “Throughout my ordeal, I’m amazed by how many people have been touched by breast cancer, either personally or through a friend or relative, and how kind and helpful everyone has been. So many organizations reached out to me that I never knew existed; there’s just so much support around us.”
Among Kennedy’s biggest fans is her doctor.
“From day one, Susan’s been so optimistic and well-informed, her own strongest advocate, and she made a choice that she felt would have a good impact on her local recurrence and long-term survival,” Camal said. “Her positive energy has advanced her healing and helped her every step of the way.”
For Kennedy, who will undergo reconstructive surgery next week, her bittersweet experience has brought a deeper connection to others who have survived the same storm, as well as those who haven’t.
“Despite the medical gains we’ve made, so many women still die from breast cancer every year,” she said. “I credit my wonderful team of doctors and join with those of us who are ‘cured,’ even for a little while, in feeling an immense sense of gratitude and also a responsibility to be strong for those who weren’t so lucky.
The following is an excerpt from Susan Kennedy’s essay “Requesting Permission to Feel,” which was written four days before her double mastectomy in October 2011.
I’m six months shy of my 50th birthday, I’m completely bald, and in four days a surgeon is going to remove both of my breasts.
I had big plans for my 49th year, and none of them included losing my breasts. But cancer has a way of thwarting even the best-laid plans, and now I’m respectfully requesting permission to feel bad about it.
I know I’m one of the lucky ones — breast cancer kills approximately 40,000 women in this country every year. Despite being invaded by an aggressive form of cancer, I’m alive, and my prognosis looks good. I just made it through six months of chemotherapy, and an almost imperceptible but real layer of fuzz is starting to grow on my head. I’m slowly coming out of the chemo fog and am able to take a good look at the rest of my life, including the surgery I’ve known was coming but have fought hard not to think about.
After months of research and many long conversations with my oncologist and surgeon, it was determined that a double mastectomy was in my future. Intellectually, I know it’s the right thing to do. But that doesn’t mean that I want to do it.
I have many caring friends and family members who have been wonderful throughout this experience and who have said I’m handling “my ordeal” with grace, humor and even bravery. But I’m not feeling very brave. My breasts are not remarkable by any standards and I’ve never engaged in efforts to show them off, but they’re a part of me, and I’m having a hard time picturing what it will be like to just wake up and have them gone.
I will do it, just a few days from now. And then I’ll pick myself up, move on, and join all of those brave and wonderful survivors in an effort to do what I can to make sure this doesn’t happen to others, or, if it does, to find a way to make their journey a little easier. I will turn 50 and think of the millions of women who weren’t so lucky, many of whom I knew and loved, and will absolutely live every day with a new sense of gratitude and purpose.
But just for the next few days, maybe a week at the most, I’m requesting permission to feel sad, scared and, yes, even a little bit angry.
As for her sense of humor, I can testify to the fact that it is undamaged. Not long after she finished her chemo, I talked to her on the phone and she joked about her hair growing back in: "Now I look just like any other middle-aged woman with a bad haircut."
Beautiful, yes?
