Why, unlike Angelina Jolie, I am not removing my breasts
My genetics suggest a high risk of cancer, like Angelina Jolie. But I’m not convinced that preventive surgery is a good idea.
Two weeks ago, I was diagnosed with breast cancer. When I got the call informing me of the results, I couldn’t understand what my doctor was saying. I’m a physician, and my doctor was offering a nuanced explanation of the findings, but that’s not what I heard. What I heard was this, “On the right, cancer cancer cancer cancer cancer and on the left, cancer cancer cancer cancer cancer.”
I began hyperventilating. I was thinking, This is a mistake. We don’t have breast cancer in my family. My mammograms are negative. This is not one of my worries. The doctor explained that it was found after my breast-reduction surgery. I stammered, “Wait, what did you say?”
My cancer turns out to be Lobular Carcinoma In Situ (LCIS)– considered more of a marker for breast cancer than actual cancer. LCIS increases my odds of developing cancer from 12 percent to 30 percent. But still, my options, my doctor explained, include immediate bilateral mastectomy.
The following week I meet my breast surgeon. She tells me that my chances of developing cancer are 80 percent and that if she were in my shoes she would “just have them both removed.” I question her about her statistics and say that I thought my odds were much lower. She acknowledges that her numbers might be off but that surgery is still highly recommended. Her offhand manner suggests something deeply unserious—like a manicure.
I’m not ready for another operation. I was scared to do the first procedure and had canceled it twice. Although I used to be a vociferous advocate for aggressive medical interventions, my perspective changed radically when I began working as a house-call physician. My patients are too debilitated to go to the doctor’s office—and many were disabled by botched surgeries. I support them through the amputations, the infections, the intractable pain, the memory loss.
Most physicians don’t see these patients. When I had an office-based practice, I never saw the one-in-eight surgical patients who end up back in the hospital in 30 days. I didn’t see the problems with hospital-acquired infections. I didn’t know that clinician texting in the operating room is rampant or that medical administration errors are, according to the Emergency Care Research Institute, “among the most common errors in healthcare.”
With these not-so-uncommon problems, our current cavalier attitude about surgery is troubling. I’m concerned about my surgeon’s flippancy and I suggest alternatives: “There’s growing data that this is a lifestyle disease. You know the Women’s Health Initiative shows exercise can greatly decrease risk.”
“I don’t know. That may be true,” she shrugs. “If we don’t do surgery, then we’ll just do mammograms every six months.” When I object, saying that LCIS doesn’t show up on mammogram, she responds, “I know. It doesn’t make sense to me either.” It becomes evident that we don’t know how to deal with my condition. The medical system does not tolerate ambiguity well, so breast amputation has become the answer. When I point out that surgery has risks, she minimizes my concerns, since she’s “never had a problem.”
“I would never get an implant. I’ve seen too many complications.” I say, “I’d prefer to reconstruct using my own tissue.”
“That’s an 18-hour surgery,” the nurse says hastily, “and you’ll be using a walker for three months.”
This information is stunning, and I think, wrong. But she continues, “We strongly discourage it. If you like, you can forego reconstruction.” She opens the book to show a woman who had two large gashes across her chest but no breasts.
I’m horrified. I want to hear about their diet and stress-reduction programs, but instead I’m looking at these mutilated women. I’m still in pain from the last surgery and can feel the burning across my chest. Suddenly I have a crush of thoughts: “A walker! I can’t afford to take three months off. I guess I’ll be stuck with no breasts. I guess there are no options. That is, if I want to live.” I feel the blood drain from my face.
“If you don’t have the surgery, your chance of getting cancer is very high.” The nurse shows me the prosthetic breasts and a garment they will supply to hold the drains. Then she adds, “But [your insurance] will only pay for part of it, depending on your coverage.” She hands me a goody bag of information. “You’re in good hands. We just became a Breast Cancer Center of Excellence.”
I walk out feeling shattered. Now I know why patients are so mad at us. This is supposed to be patient-centered care. But it feels more like system-centered care: the medical equivalent of a car wash. I’m told incomplete and inaccurate information to shuttle me toward surgery; and I’m not being listened to.
I came to discuss nutrition, exercise and close follow-up.
I’m told to get my breasts removed—the sooner the better.
Mastectomy may be appropriate in some cases, like in those where your risk of cancer is virtually 100 percent. But the risk of surgery—operative complications, infections, device and graft complications—remains significant. It’s callous and irresponsible to elide the risks to the public.
Mastectomy may be the right course in my case. And it seems to be the celebrity way. But it’s not the only course. So while I find out what’s right for me, I’m keeping my risky breasts.
I began hyperventilating. I was thinking, This is a mistake. We don’t have breast cancer in my family. My mammograms are negative. This is not one of my worries. The doctor explained that it was found after my breast-reduction surgery. I stammered, “Wait, what did you say?”
My cancer turns out to be Lobular Carcinoma In Situ (LCIS)– considered more of a marker for breast cancer than actual cancer. LCIS increases my odds of developing cancer from 12 percent to 30 percent. But still, my options, my doctor explained, include immediate bilateral mastectomy.
The following week I meet my breast surgeon. She tells me that my chances of developing cancer are 80 percent and that if she were in my shoes she would “just have them both removed.” I question her about her statistics and say that I thought my odds were much lower. She acknowledges that her numbers might be off but that surgery is still highly recommended. Her offhand manner suggests something deeply unserious—like a manicure.
I’m not ready for another operation. I was scared to do the first procedure and had canceled it twice. Although I used to be a vociferous advocate for aggressive medical interventions, my perspective changed radically when I began working as a house-call physician. My patients are too debilitated to go to the doctor’s office—and many were disabled by botched surgeries. I support them through the amputations, the infections, the intractable pain, the memory loss.
Most physicians don’t see these patients. When I had an office-based practice, I never saw the one-in-eight surgical patients who end up back in the hospital in 30 days. I didn’t see the problems with hospital-acquired infections. I didn’t know that clinician texting in the operating room is rampant or that medical administration errors are, according to the Emergency Care Research Institute, “among the most common errors in healthcare.”
With these not-so-uncommon problems, our current cavalier attitude about surgery is troubling. I’m concerned about my surgeon’s flippancy and I suggest alternatives: “There’s growing data that this is a lifestyle disease. You know the Women’s Health Initiative shows exercise can greatly decrease risk.”
“I don’t know. That may be true,” she shrugs. “If we don’t do surgery, then we’ll just do mammograms every six months.” When I object, saying that LCIS doesn’t show up on mammogram, she responds, “I know. It doesn’t make sense to me either.” It becomes evident that we don’t know how to deal with my condition. The medical system does not tolerate ambiguity well, so breast amputation has become the answer. When I point out that surgery has risks, she minimizes my concerns, since she’s “never had a problem.”
This is supposed to be patient-centered care. But it feels more like system-centered care: the medical equivalent of a car wash. I’m told incomplete and inaccurate information to shuttle me toward surgery; and I’m not being listened to.She sends me to discuss my options with the nurse. The nurse shows me some diagrams explaining my surgical options. Then she pulls out her big book of breast amputations. I have no intention of getting a mastectomy. Yet, I remain transfixed by the photographs.
“I would never get an implant. I’ve seen too many complications.” I say, “I’d prefer to reconstruct using my own tissue.”
“That’s an 18-hour surgery,” the nurse says hastily, “and you’ll be using a walker for three months.”
This information is stunning, and I think, wrong. But she continues, “We strongly discourage it. If you like, you can forego reconstruction.” She opens the book to show a woman who had two large gashes across her chest but no breasts.
I’m horrified. I want to hear about their diet and stress-reduction programs, but instead I’m looking at these mutilated women. I’m still in pain from the last surgery and can feel the burning across my chest. Suddenly I have a crush of thoughts: “A walker! I can’t afford to take three months off. I guess I’ll be stuck with no breasts. I guess there are no options. That is, if I want to live.” I feel the blood drain from my face.
“If you don’t have the surgery, your chance of getting cancer is very high.” The nurse shows me the prosthetic breasts and a garment they will supply to hold the drains. Then she adds, “But [your insurance] will only pay for part of it, depending on your coverage.” She hands me a goody bag of information. “You’re in good hands. We just became a Breast Cancer Center of Excellence.”
I walk out feeling shattered. Now I know why patients are so mad at us. This is supposed to be patient-centered care. But it feels more like system-centered care: the medical equivalent of a car wash. I’m told incomplete and inaccurate information to shuttle me toward surgery; and I’m not being listened to.
I came to discuss nutrition, exercise and close follow-up.
I’m told to get my breasts removed—the sooner the better.
Mastectomy may be appropriate in some cases, like in those where your risk of cancer is virtually 100 percent. But the risk of surgery—operative complications, infections, device and graft complications—remains significant. It’s callous and irresponsible to elide the risks to the public.
Mastectomy may be the right course in my case. And it seems to be the celebrity way. But it’s not the only course. So while I find out what’s right for me, I’m keeping my risky breasts.
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