She's been described as glamorous, talented, a humanitarian, and most recently courageous. But I'd like to add another. Angelina Jolie, in this oncologist's opinion, is one of the more deeply thoughtful patients I've come across. She seems to have a gift to make complex medical decision making look easy. And her gift to us may be in sharing the algorithm she described in making her own medical decision.
In case you missed it, on May 14, 2013 Ms. Jolie published a widely-reported op-ed in the New York Times entitled "My Medical Choice," in which she describes her mother's battle with cancer, her own diagnosis of a faulty BRCA1 gene and her subsequent prophylactic bilateral mastectomy to reduce her astronomical 87 percent lifetime risk of getting breast cancer. Most coverage to date focused primarily on the stunning admission of her personal medical history and dramatic surgery she has endured. Others articles hailed her for opening a conversation of managing cancer risk. And although both are true, I find most fascinating the simple yet elegant thought process Ms. Jolie described in coming to her own medical choice. I've seen countless women in my practice wrestle with this decision. Do I get tested? What will I do with the result? Is it worth it? Is this the right time? In her beautifully-written essay, Ms. Jolie lays out an algorithm for patients to work through in coming to their own personal decisions in the management of their own cancer risk: identification of increased risk of cancer, understand treatment options available and their effectiveness, decide if treatment is in keeping with our personal value system, and act accordingly.
Am I at increased risk?
Most cancers, including breast cancer, are sporadic. They result from acquired genetic abnormalities that accumulate over a lifetime. These require no special testing or treatment measures. But in a handful of cases, cancer can be caused by an inherited abnormal gene, passed along from a mom or dad to their children. So how can you tell the difference? As Ms. Jolie describes, get a good family medical history. Does your family seem to have more than its fair share of cancer cases? Do you have family members who get cancers early in their lifetimes? Thirties or 40s? Maybe even 20s? Many different kinds of cancers, not just breast and ovary, can be inherited. So be wary of other cancers including pancreas, colon, uterus, bladder and even melanoma. Rule of thumb: If your family gets together more at funerals than weddings, there may be a problem.
Lead with your head.
Start with the science. Discuss the family history with your doctor or, better yet, a genetic counselor. These professionals can help identify genetic abnormalities known to increase your cancer risk through a simple blood test or even cheek swab. They will help you interpret the results and discuss options of treatment and effectiveness of risk reduction. Ms. Jolie describes a blood test for BRCA1 gene, which increased her likelihood of developing breast cancer to 87 percent over her lifetime. Most genetic cancer risks are not that high. Her double mastectomy dropped her breast cancer risk back to 5 percent.
There can be some problems though. Firstly, all gene abnormalities aren't yet known. So approximately 12 percent of testing can be just wrong. Secondly, the risk reductions of all interventions aren't always as well known either. So you may not get fully accurate assessment, just the best we have at this time. Finally, evaluate all treatment options available along with the risks and benefits of each.
Follow your heart.
There will likely be several options available to manage the increased risk of cancer. Preventative surgery is not the only option and is used in less than half the cases of genetic abnormality. So don't forgo needed testing just because you can't part with your parts. Some medications reduce cancer risk. And out-of-the-box screenings such as MRI of the breast, scopes in the bladder and kidney tubes, capsule endoscopy (swallowing a tiny camera in the form of a pill which takes pictures of your intestines), and dermatology exams all can find and remove suspicious lesions before they become cancer. There is very likely some approach that you will feel comfortable with to reduce your cancer risk.
Act.
After careful consideration to the science of risk reduction through the lens of your personal values, there is usually a clear path to follow. Getting onto that path though is oftentimes a different story. Many folks, and at the risk of being politically incorrect, many women, run into obstacles in getting their own health care issues taken care of because they are so busy caring for those around them. Too many times I've diagnosed women with uncurable late stage cancers who got to them because they were looking after a spouse or child or a parent. It is not selfish to include yourself in the list of those people you need care for. Nor is it egocentric to put yourself at the top of the list. Your ability to care for others will be limited if you, yourself are unwell. Take the plunge. Make the decision. And follow through.
If it sounds like a lot of work, it is. If it sounds like some tough decisions will need to be made, they will. If it sounds like it's not worth it, think again. Ms. Jolie's reasoning behind going through this process is the integrity of her family. Her mother's loss to cancer was deeply felt and she wishes to avoid this trauma for her own children. Her reasons were her own, and yours will be your own. But at least there is a plan. A simple algorithm that may also keep your family together: identify the risk, lead with the head, follow with the heart and act. It may be the first thing you ever do.
For more by Rick Boulay, M.D., click here.
For more on breast cancer, click here.