Fear And Vulnerability Are Keeping Breast Cancer Patients From Asking Tough Questions

Women who receive a breast cancer diagnosis often shut down. When I was diagnosed with breast cancer, I did just the opposite. I told everybody I knew, and invited them to share the news. This is how I found my way to individuals and organizations that empowered me to make informed decisions, including patient advocates, integrative oncologists, and global communities including BreastCancer.org. I also have an academic background that helped me research the literature, so it was easy to access the wealth of information in books, scientific journals, and online.

More than 40,000 women in the U.S. die every year from breast cancer, and many more suffer with debilitating side effects. I myself live with the aftermath of a breast cancer surgery that my surgeon now agrees I may not have needed. Some of my decisions would have been different if I had known then what I know now. When you have cancer, you are afraid, and it's easy to cave to authority. I unfortunately did. The surgeons were simply following the standard of care at the time. I call this the “one-size-fits-all-approach."

My message to you: we all need to question authority when it comes to cancer treatment. Think about how thoroughly you research any major purchase—a car, a home. Cancer treatment is a big-ticket item involving choices that determine whether you live or die.

When you first receive a breast cancer diagnosis, you may ask “Why?", then “Why me?" And very quickly, many who are diagnosed become compliant, passive, and silent.

We stop talking because of fear. Of course, we fear our own death, and we fear pain and suffering. And, some may be afraid that their illness may be too big a burden for friends, family and work associates to bear.

A history of male authority in medicine contributes to our silence, too. As women with an intimately feminine form of cancer, we may literally feel embarrassed, ashamed or afraid to ask, and definitely afraid to disagree. When we begin to ask and explore, we find out that treatment options are complex.

Much of the most cutting-edge information is not presented by mainstream medicine.

You can find this information yourself, and you can also work with a patient advocate if you need help.

When you're confronted with a breast cancer diagnosis, become informed so that you caninteract responsibly with your medical team and ask the right questions:

You can find more questions at My Breast Cancer Coach, and if you have a smartphone, download the My Cancer Coach App, which also features a list of questions for your doctor.

Be sure that your doctor and your hospital will be covered by your insurance. If any part is not covered, have a financial agreement in writing prepared beforehand. Get help from a patient advocate in doing this if necessary.

According to the American Cancer Society, about 85% of those diagnosed with breast cancer have no family history. This means that lifestyle and environment play a greater role than heredity, which is good news because it means that many of the factors that cause cancer are in our control and largely preventable.

I am convinced that our constant exposure to man-made carcinogens in the environment is a big factor in cancer incidence. Because these substances are produced by huge corporations and allied with many governments, getting them out of our environment is a lifelong mission that requires long-term legislation.

On a personal level, my experience is that removing carcinogens from your own individual “terrain" will support your health, whether you want to lower your risk of initial cancer, or lower your risk of remission. An integrative oncologist may be of help to you here. My integrative oncologist gives me regular blood and saliva tests to measure the factors that help cancer grow, and we correct whatever is off through a combination of nutrition, supplements, exercise, stress reduction, and avoidance of environmental carcinogens.

Remember that your surgeon and other doctors involved with your treatment cannot make the best decisions for you—you must do that for yourself. Question your MD's medical directives, and get second, third and fourth opinions. Own that power, and find the help you need to make your most conscious, deliberate choices.

There are many resources available. You can get medical information from the National Cancer Institute (cancer.gov) and The American Cancer Society (cancer.org). You can get support from other patients at Cancer Support Community (https://www.cancersupportcommunity.org/), and BreastCancer.org, where I found community as well as information. For example, through the remarkable global network of women living with breast cancer, treatment and side effects, I learned how to keep my hair – for which I am forever grateful!

When I was diagnosed with breast cancer, all five of the surgeons I consulted agreed that I needed the procedure.