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Advocating for Your Breast Cancer Care

Katherine –a 13-year breast cancer survivor –shares her experience and how genomic testing impacted her breast cancer treatment decision. She had a double mastectomy and was advised by three different oncologists to get chemotherapy. Having learned about a genomic test called Oncotype DX, which could help determine whether or not she would benefit from chemotherapy, she asked her doctor about the test and discovered she had a low Recurrence Score. Watch her video to learn more about her journey.

Successfully Navigating My Diagnosis by Laurie Levin

Breast Cancer Survivor LaurieLaurie Levin, an anthropologist, author and web columnist, has been through her own personal breast cancer journey. Read to Q&A below about how she coped with her diagnosis and empowered herself to successfully navigate that experience.

What were the most helpful resources to you when you first received your breast cancer diagnosis?

I believe a major teaching/research medical center can offer tremendous resources for finding the most cutting edge breast cancer treatments. I was affiliated with one since my 1977 lymphoma diagnosis. So when I was diagnosed with breast cancer in 2005, I was still seeing the same oncologist and in the right place. He became involved the moment the suspicious results came from my mammography center and by the next day, I was in his office, scheduled for a biopsy. Less than two weeks later I underwent a lumpectomy.

“There’s nothing like speaking with someone who has gone through what you are about to tackle for practical, day-to-day advice.”

With my medical team in place, I turned to my friends and acquaintances who are breast cancer survivors for non-medical advice and emotional support. There’s nothing like speaking with someone who has gone through what you are about to tackle for practical, day-to-day advice. My personal network has been a good source for post-surgery and radiation tips, as well as helpful information about dealing with the side effects of the aromatase inhibitor I’ve been taking for the last five years—all of which made a huge difference in my comfort levels and recovery.

Did you experience information overload? If so, how did you manage it?

While it is important to be informed, I soon found out that the quality of information is more important than the quantity. I decided to restrict my time on the computer and, even then, targeted my searches to only the most reputable organizations such as the National Cancer Institute and trustable patient advocacy sites such as this one. Because there’s no one-size-fits all solution to breast cancer, I made sure to double check everything I’d read on the web with my oncologist who clarified if and how the information related to my particular case.

I also became aware that the time I was spending discussing my diagnosis—the flood of telephone calls and conversations on chat lines—was wearing me down and feeding, not soothing, my anxiety. By setting up a group “Laurie Update” email to inform everyone of my progress on a regular basis, I was able to keep people in the loop without having to continually repeat the same news over and over with each concerned caller or e-mailer. When I requested that people not call, everyone understood. Not only did this help clear my head, it also freed me to contact people when I felt like it—or not at all—with no hard feelings.

“I…told myself, ‘Don’t get ahead of yourself.’”

At the same time, I gave myself a good talking to. The challenge was this: to stop the doomsday chatter inside my head and rein in my worst fears. I decided that even if I couldn’t control the outcome of my illness, I did have the power to shape my experience of the journey. So when I was spinning out with hypotheticals or “what ifs” I came up with a helpful personal mantra and told myself DON’T GET AHEAD OF YOURSELF. Nothing has been more calming or sustaining, except the 100% confidence I have in my oncology team.

Breast Cancer Laurie and HusbandWhere did you turn in order to help inform your treatment decisions?

The more I find out about breast cancer, the more I am staggered by its biological complexity. That scientists and physicians know as much as they know is humbling; that they can do as much as they do is inspiring. I knew I was in good hands with my oncologist—after all he’d saved my life once before (!)—and I trusted he would guide me to my best treatment options. But I wasn’t passive and insisted he explain enough to me so I could feel comfortable and confident with each decision. As always, he answered my questions and the advantages and limitations of each treatment option every step along the way.

How did you partner with your health care team to come up with a treatment plan? How did you decide whether or not to get chemotherapy, radiation, or other therapies?

My treatment options were quite constrained given my complicated health history. After it was determined I was eligible for a lumpectomy, my next hurdle was whether I would benefit from chemotherapy. Because I’d already reached my lifetime doses of certain drugs used to treat my lymphoma 30 years prior, receiving some of these same agents again placed me at higher risk for some life-threatening side effects.

Fortunately, my knowledgeable oncologist told me we could personalize my treatment and I was eligible for Oncotype DX®, a test that would indicate whether I would benefit from chemotherapy or not. The moment I received the results, I felt I'd been given my life back. My low Recurrence Score® replaced my fears with reliable, scientific information upon which to confidently base the decision to skip chemotherapy. The test results also gave me the courage to believe I might be and stay healthy in the future.

What are some of the challenges you faced in discussing your cancer diagnosis with family members, loved ones, friends, and colleagues? How did you overcome those challenges?

Going “public” with a cancer diagnosis is a delicate matter. Mention the C-word, and a death bomb drops – some people freeze in their tracks, others dive for cover and a few dig in to lend a hand. All I really needed was to be heard, but I quickly learned not everyone was prepared to listen. The last thing I needed was to have to deal with someone else’s fears about what they thought was going to happen to me. I had enough on my plate.

“The last thing I needed was to have to deal with someone else’s fears about what they thought was going to happen to me.”

My strategy was this: spare the details and reap the relief—choose who you tell, when you tell them and what you tell them carefully. Crafting a 'no-frills' version was my best solution. I'd elaborated if and only if I felt the person I was speaking to was ready to hear more. I trusted my intuition and followed it. Over time and as I began to recover, I tired of hearing myself talk about breast cancer. Once I stopped feeling the need to speak about it—not that it was a secret or something I was ashamed of—I knew I was healing and ready to help heal others.

What is the most important piece of advice you can offer other women to make sure they feel confident and empowered through their diagnosis and treatment?

Breast Cancer Survivor
Self-care is an absolute must during treatment, recovery, and beyond and this translates into different things for each woman.”

Self-care is an absolute must during treatment, recovery, and beyond and this translates into different things for each woman. For me, it meant getting more rest than usual and not making any excuses. It meant making sure I was eating well, even when I didn’t have much of an appetite. Not just my usual healthy diet, but one that addressed the special repair demands that surgery, anesthesia and radiation made on my body. And it meant, continuing to exercise but modifying my program in keeping with my recovery process. During my six weeks of radiation, for example, I reduced my normal hikes to shorter walks around the block and I didn’t push back to my former levels until my energy returned.

I also discovered how simple pleasures are healing and I often tapped into personal favorites for well-deserved breathers. Whatever gave me joy I did (and do!): dining with close, loving friends, seeing a good movie, immersing myself in an engaging book. And, I threw small indulgences into the mix whenever possible – giving in to a morning cinnamon twist en route to radiation or picking up a bouquet of cut flowers on the way home. Above all, I was kind, patient and good to myself.

Were you able to keep up with your daily routine? If so, how did you manage it?

“By welcoming assistance, I avoided over-extending myself and was able to keep my everyday life on track. For that I am grateful.”

When my daily routine felt overwhelming, I accepted offers of help from family members and friends. Life's small tasks and familiar rhythms take the edge off my worries and when I couldn't do them, others did. This took many forms such as driving me to a treatment, watering my garden, or picking up some take-out food if I was too tired to cook after radiation. Allowing people to lend me a hand was far better than receiving a get-well gift or a card. By welcoming assistance, I avoided over-extending myself and was able to keep my everyday life on track. For that I am grateful.

Maintaining my work schedule was another area of my life where I knew it wasn't going to be business as usual. Before informing my employer of my changed health status, I thought carefully about my priorities. I Laurie Breast Cancer Survivorwanted to protect my job, honor the demands of my treatment, and ask for understanding, but not necessarily emotional support—I already had all I needed from my husband, family and close friends. So when we met in her office, I stuck to a simple explanation of my medical situation, stripped of embellishments. Much to my relief, our exchange quickly shifted from my illness to how we'd work together during my treatment. We agreed to draw on flex-options, post-surgery and during radiation and/or chemo, teleconferencing instead of attending project meetings and telecommuting from home when I couldn’t make it into work. I also agreed to update her as to any changes in my treatment plan or prognosis that might stand in the way of making good on my obligations.

Read more about Laurie and stories from other breast cancer patient at

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When you've been diagnosed with breast cancer, lots of questions come to mind. You can find and connect with other breast cancer patients through the online support community. Visit the Discussion Boards to browse stories, support, and information offered by the community.