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I Never Thought I Would Get Metastatic Breast Cancer: Dianne’s Story

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A woman's story about unexpected Metastatic Breast Cancer nolonely/fotolia

Sponsored by: Beyond Pink: Sharing Our Metastatic Breast Cancer Story, a program brought to you by AstraZeneca

Dianne never thought her cancer would come back after successful treatment for stage II breast cancer in 2010. However, three years later at the age of 27, she learned it had progressed to metastatic breast cancer (MBC). MBC is the most advanced stage of the disease in which the cancer has spread from the breasts to other areas of the body, such as the brain, liver, bones or lungs.

“I felt like I wasn’t as educated as I could have been about the possibility that it could ever come back,” said Dianne. In reflecting on her journey, she notes that she wishes she had been more prepared as a patient and not been afraid to ask her medical team questions about her diagnosis, so she could be actively involved in her treatment decisions. “Ask your doctor to be honest with you. Let them know not to hide anything or keep statistics from you, no matter how daunting the response may seem,” Dianne said. “Knowledge is power. So the more you know, the better you can be involved in your treatment plans and decisions.”

Becoming educated about the disease is also one of the best ways to advocate for yourself on your MBC journey. For example, learning about the symptoms of metastatic breast cancer, which will vary based on the location to which it has spread, is key information to discuss with your doctor that can aid in choosing the best course of action for your care. All too often, for women like Dianne, learning about the disease is easier said than done. “The information I was looking for wasn’t as available as I thought it would be,” Dianne said. “I’d go to doctors and treatment centers with questions. So my own education consisted mostly of online research and seeking out as much information as I could from doctors.” Another important fact to keep in mind is that MBC actually can return in as many as 20-30 percent of women who have received an early stage breast cancer diagnosis and 6-10 percent of MBC cases are metastatic when initially diagnosed.

The progression of MBC can be related to, and driven by, the presence of hormone receptors on the tumor. While there is currently no cure for the disease, Dianne stresses the importance of knowing the tumor’s hormone-receptor status, as it can help one’s medical team identify and tailor appropriate treatment options.

The three most common classifications (which can also be present as a combination) for metastatic breast cancer are:

  • hormone receptor-positive (driven by estrogen and/or progesterone)
  • HER2 positive (when too many HER2 receptors cause the tumor cell to divide too quickly)
  • triple negative (when tumor cells are neither estrogen, progesterone or HER2 positive)

MBC tumor types may also change over time, so it is important to discuss this with your doctor and periodically re-biopsy to check if the hormone receptor status of a tumor has changed. If your tumor has changed, your medical team will advise whether your current treatment plan should be modified, and together you can decide the best course of action.

Finding the right support on your journey is also extremely important for actively managing your MBC. As a mother of two young boys, Dianne recalls that she struggled to relate to older women in the first support group because their concerns were different from hers. “Their concerns were seeing their grandkids born, while my concern was getting to see my children play their first sport or graduate from college. Finding the support I needed became a personal journey in itself.”

For Dianne, this involved forming her own support group of women with whom she could better relate. “I’d ask doctors to put me in touch with those newly diagnosed, younger women who wanted support. Many of us belong to the same treatment center. We get together once a month at somebody’s house. When we’re not together, we keep in touch by phone and online. And the best part is, it doesn’t always involve talking about cancer. Sometimes it does, but other times we take comfort in sharing our personal journeys and the milestones that matter to us most,” Dianne said.

Dianne now advises those who have been newly diagnosed with MBC to find support that is right for them – whether through in-person communication or online resources – to help educate each other about the disease and better manage their personal needs during the metastatic breast cancer journey. “No story is ever the same. We’ve learned so much from each other. It’s a beautiful thing to have the right kind of support on this journey.”

Born out of feedback from Dianne, and other women in the metastatic breast cancer community, that there is a need for tailored resources and support for the MBC community, AstraZeneca launched the Beyond Pink: Sharing our Metastatic Breast Cancer Story campaign. The website offers education and information to help those living with metastatic breast cancer better manage the MBC journey.

Visit LifeBeyondPink.com to learn more about MBC and show your support for those living with the disease by downloading and applying the social media skins available on the website.

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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