Once you get a breast cancer diagnosis, you’ll be faced with a series of decisions about your treatment almost immediately. Many of these will revolve around the types of surgical procedures you’ll undergo. Should you have a lumpectomy or a mastectomy? If you choose a mastectomy, will you have one breast removed or both? And what about breast reconstruction after surgery — is that for you?
Your doctors will present a range of options and should explain all aspects of what the road ahead will look like for you, but you also need to think carefully about what you want for yourself and what treatment will fit with your lifestyle. Aligning your needs and preferences with the best potential outcome can be a challenge, and open communication and a thorough delivery of information is critical to making sure you’re able to make the best decisions you can.
But this doesn’t always happen, explains Dr. Clara Lee, associate professor of plastic surgery and of health services management and policy at The Ohio State University Wexner Medical Center. She recently published a study in JAMA Surgery that found 57 percent of patients make “poor decisions” for themselves with regard to breast reconstruction after surgery for breast cancer.
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Lee says good decisions can be defined several ways, but for the study, which was conducted among 126 women at the Lineberger Comprehensive Cancer Center at the University of North Carolina Chapel Hill, the definition of a good decision was one that was “both informed and consistent with the person’s preferences.” The study asked women who’d undergone plastic surgery after breast cancer treatment a series of questions regarding how they felt about the outcome and found that many women were not as well informed of their options as they could have been. What’s more, having been better informed would likely have elevated the percentage of women who were happy with the results of their surgery.
Lee’s study points to a gap in communications between patient and health care providers that’s common across all fields of medicine where patients must make decisions about their care. Doctors have long tried to communicate the range of options available to patients in these instances, but because patients are usually lay people who don’t have much direct experience with medicine until they need to, they don’t always understand all their options or grasp the full implications of the information that’s being presented.
In an effort to address these gaps and help women make better decisions for themselves, Dr. Laurie Kirstein, a breast surgical oncologist at the Memorial Sloan Kettering Cancer Center, is developing a web-based decision-making tool that should help women collect the information they need to make the best decision they can. The tool is in the clinical trial stage and currently available to a limited number of patients associated with MSKCC and Rutgers University, but Kirstein hopes the results will show it to be a useful way for women everywhere to improve the decision-making process.
The tool guides women through a series of questions about their care options and includes pages of information about what to expect from procedures and treatments. “Patients have a lot of choices these days, and a diagnosis of breast cancer makes many women want to take a nuclear bomb to it and never have to think about it again,” she says. Hence, the recent rise in women electing bilateral mastectomy, or removing both breasts, as a treatment option. “As physicians and health care providers, what we don’t want is someone to come back and regret their decision,” Kirstein says, and by creating a tool that will help patients work through their many options and provide them with detailed information about their risks and potential outcomes can help make that decision-making process easier. “Clearly we support a woman to make the decision that’s right for her,” Kirstein says.
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A Long Talk
Long before technological tools aimed to make the process easier, doctors simply explained options and risks to patients, and this time-honored aspect of medical counsel is still key to you making the right decision for yourself.
As a plastic surgeon, Lee meets with patients to determine whether they want to reconstruct their breasts after treatment, and she spends “a whole lot of time asking the patient about herself. Particularly eliciting what she values and what her goals are,” she says. Lee always starts with the question, “‘What are you most concerned about with regard to breast reconstruction?'” and says patients nearly always have an immediate response that can help guide the rest of the discussion. “I’ve never had a patient with no preference, and I’ve also found that you can never predict what it’s going to be.”
They then discuss the patient’s daily life and activity level, and they review pictures of different procedures for a visual comparison of potential results. Patients are sent home with a booklet and a description of the various pros and cons of each option that’s been tailored to the specific patient. “I generally encourage them to go home and think about it rather than making a decision right then and there,” Less says. “Some patients know exactly what they want, but it’s a ton of info to take in at once.” Lee follows up with patients a week later to see if they’ve made a decision or need more information.
Because most breast cancers are slow growing, most patients can take a little time to consider their options, and Lee says it’s important to not feel like you’re being rushed into a plan. “It’s not usually super urgent, but patients often think it is.” Slowing down just a bit to allow yourself to make a considered decision can help you avoid making one that you’ll be unhappy with later.
Dr. Mary Gemignani attending surgeon at Memorial Sloan Kettering Cancer Center and the program director for surgical fellowship, also says taking your time is important. She tries to offer her patients gaps in the presentation of that information that will allow them to better process what they’re learning by interspersing the ongoing discussion with testing. “We’ll go over one part, and then I’ll say, ‘why don’t we talk after you have this additional testing done?'”
She also tells patients to remember that you can always call the doctor back and that you shouldn’t feel pressured to confine all your questions to just the in-person appointment. “After you’re done with the consult, if you still have questions you were too overwhelmed to think of or want to readdress some questions,” call the doctor back.
[See: Breast Pain? Stop Worrying About Cancer.]
What’s more, Gemignani recommends bringing a loved one with you to the appointment to help you sift through the information. But beware. “You might have some family members that may disagree with what you decide to do. Decision making is very personal and when you’re sitting in that chair, it’s not about what you read in the media or what other people are doing and what your family thinks you should do,” Gemignani says. “Ultimately the decision is for yourself and getting the information you need is the most important part of these meetings.”
Lastly, you need to do your own homework and advocate for yourself. Your doctors will likely do everything they can to get you the information you need to make your decisions, but in the end, you have to think critically for yourself and make the decision that you think is best. If you’re not understanding your doctor, ask him or her to slow down, go back and cover something again or consider seeking a second opinion. Many women write pro-and-con lists that compare their options — being able to see them laid out side by side can help. You may also find it helpful to speak with someone who’s supportive and has your best interests at heart.
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How Can I Make the Best Breast Cancer Treatment Decisions for Myself? originally appeared on usnews.com
