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

Health

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.

Why do we stop asking questions?

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 can interact responsibly with your medical team and ask the right questions:

  • What are all of the treatment options, including alternatives to the standard of care?
  • What is the statistical outcome for survival for each option?
  • What are short-term and long-term risks, and side effects?
  • How can I minimize side effects?
  • What can I do to improve my chances of a good outcome?
  • What would you do if you were in my situation?
  • What stage is my cancer?
  • How large is my tumor?
  • What grade is my tumor?
  • How quickly is my cancer growing?
  • Is my cancer invasive?
  • Has my cancer metastasized?
  • Am I a candidate for other diagnostic tests such as Oncotype Dx?
  • What is my hormone receptor status?
  • What is my HER2 status?

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.

Ask the tough financial questions

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.

Prevention is underrated, and poorly understood.

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.

Ask, question, research, and ask again

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.

"The story would be different today, and it can be different for you. And I am grateful that I am now empowered to bring my message as an author and public speaker to everyone whose life is changed by breast cancer."
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Career

How I Went From Managing Complexity to Becoming a U.S. Ambassador and CEO

For the last 30+ years, I have focused on bringing together political parties, corporate competitors and disparate nations to foster quality leadership, diplomacy and results that better society, creating sustainable partnerships and profitable business models. Has it been easy? By no means. Rewarding? Immensely.


Here's what I learned along the way, how I did it, and how you can, too.

When I left Washington to enter the corporate world, I was asked to investigate and determine ways that companies were struggling to be successful in areas where major investments were being made. This meant meeting with and challenging key executives, staff and stakeholders, benchmarking against best in class competitors and making recommendations that change processes, cultural norms and internal ownership. The end goal was always to move the organization or activity to a higher level of performance. In other words, my job was to figure out what were the "boulders in the road" and move them. The boulders in many cases were people or projects they designed and held dear. Not surprisingly, my inquiries caused adverse reactions. Over time, as boulders turned into rocks, and rocks turned into pebbles, consensus came to bear, and goals were met that enabled the organizations, department owners within them, and society to thrive. My work – which had been unwelcomed by some – was accepted, and even appreciated, by those who had once been critical.

As a 26-year-old who was doing this for the first time and facing strong head winds expressed in highly personal ways, I sought advice from my father, an executive operating in a highly politicized arena. His letter is worn, but I keep it on my desk.

"I wish I could be there with you when you have to face these challenges...just remember to look beyond what is currently in your life and try to visualize what is unseen. Count your blessings and it will also help you challenge the crisis you are experiencing...Some of the greatest stumbling blocks I have ever faced have also resulted in being my greatest stepping-stones." His wise words encouraged me to turn managing complexity into an artform. As a U.S. Ambassador and the first female Commissioner General to the World Expo, I was able to create an atmosphere of confidence amongst project investors which resulted in the first financial surplus in the history of US participation in a World's Fair. As CEO of FARE, I guided a major restructure to support food allergy research and received commitments of $75M within 12 months.

Here is what I learned along the way, including guidelines I follow each time I find myself facing a new or complex situation:

  • Recognize that when there are different levels of real-time execution and a sense of urgency, the risk complexity is multiplied. Know what you want the organization or alliance to look like, speak with facts and build a roadmap to get there.
  • Break down each problem, recognize the constants and the variables. Identify what is the same in each situation and what is unique.
  • Itemize the constants. What characteristics are seen across the entire organization which are impediments to change? Fix those first.
  • Identify the unique issues that are compounding the problem, e.g. finances, people, legal, channel relationships, history, culture and politics.
  • Don't pretend to know what you don't know. It hurts your credibility. Keep asking: Why? How does x relate to y? Who makes that decision? Remember, as a change agent, you are not expected to be the subject matter expert, so feel confident and admit you don't know how "the thing" works. Your goal is to understand the pathway for how we ended up where we are today—a place none of us want to be.
  • Move boulders out of the way for your team, so that really smart people who are committed to the new way of doing things can run as fast as they can without being tripped. Your job is to manage the complexity by keeping your eye on standards, governance, revenue, external perceptions, fiduciary responsibilities and long-term consequences. Adjust accordingly to avoid greater problems while continuing to move towards the long-term goal.
  • Align incentives to change by identifying motivations to better maximize resources. View the situation from the perspective of the other person and determine what is most important to them. Unless the organization or situation is completely broken, you can find ways that everyone can feel a sense of ownership in the new way of operating. Although there is a sense of urgency, you can move more quickly by bringing your critics along if you frame your recommendations in a manner that positions change in their vernacular and aligns with their worldview.

The Merriam-Webster dictionary defines complexity as "the quality or state of not being simple; a part of something that is complicated or hard to understand." However, always remember problems can be solved and issues can be resolved as long as you stay committed to the facilitation of success. Inspire the loyalty of those around you. Celebrate the early wins. Systematically, keep key stakeholders apprised of successes and challenges on a regular basis.

Most importantly, focus on helping others succeed. Let your employees know – and demonstrate – that they are a part of a team that matters. To achieve real, meaningful social impact, leaders and their teams must be sure their actions are also real and meaningful.