Surviving Metastatic Breast Cancer: A Journey of Resilience, Advocacy, and Connection 💪🎗️

Susan Rahn's Battle with Metastatic Breast Cancer A 10-Year Journey

I am more than just the medication I take

By Susan Rahn, as told to Lauren Evoy Davis 😊

Image Credit: Adam Kazmierski / Getty Images

Introduction: Discovering My Journey 🛣️

In August 2013, I received a diagnosis that changed my life forever. It was metastatic breast cancer. Surprisingly, this life-altering news came just nine months after a clear mammogram. I experienced no warning signs, no suspicious lumps – nothing. It was back pain that led me to seek medical attention, eventually revealing the shocking truth. Tests showed a sizable tumor in my thoracic spine and lesions in my ribs. The breast cancer had metastasized to my bones. 😮

No Evidence of Disease: Fighting the Battle 🚫🦠

My journey began with radiation targeted at my spine, followed by an aromatase inhibitor. This drug, which inhibits estrogen production in the body, is used to impede cancer cell growth fueled by estrogen. However, due to the unmanageable side effects, my doctor switched me to a different aromatase inhibitor designed for menopausal women. After 18 months, I paused treatment for a lumpectomy to remove cancerous breast tissue. Then, my treatment plan evolved once more, and I started receiving Faslodex and Ibrance. Throughout the years, this combination, along with an ample dose of luck, has kept me living with no evidence of disease for nearly seven miraculous years. It’s important to note that, given the estrogen-fueled nature of my cancer, I also had my ovaries removed. 👍

Q&A – What are aromatase inhibitors and how do they work? Are there alternative treatment options available?

Advocating for Myself: Empowered and Informed 🗣️📘

Being an advocate for oneself takes various forms. Personally, it involves staying well-informed about the latest advancements in treatment options, reviewing all test results and scans, and asking questions, even if everything appears fine. Attending conferences has connected me with medical professionals who speak on a range of helpful topics. One of the most important aspects of self-advocacy is maintaining open communication with my care team. Over time, I’ve learned the value of questioning “why?” instead of blindly following medical advice. It’s okay to seek clarification when something isn’t immediately clear. Together, we can make informed decisions. 🏥🔍

Q&A – How can I effectively advocate for myself in my healthcare journey? What steps should I take to ensure open communication with my care team?

Managing Side Effects: Motion for Wellness 🏋️‍♀️💊

Navigating the side effects of treatment hasn’t been easy. The initial medications I took caused stiffness and pain in my joints and bones. Surprisingly, movement has become my saving grace. I joined a program called Livestrong, offered by my local YMCA. Initially skeptical, as movement already intensified my pain, I discovered that staying active actually reduces discomfort. Now, I regularly perform exercises at home to maintain flexibility and keep my body moving. Sometimes, the solutions that initially seem counterintuitive hold the key to our well-being. 💪💃

Q&A – How can exercise and physical activity help manage the side effects of cancer treatment? Are there specific exercises that are beneficial for metastatic breast cancer patients?

Unleashing Mental Wellness: Harnessing the Power of Emotional Support 🧠📖

During my journey, I’ve come to understand the crucial importance of addressing mental health alongside physical well-being. Luckily, I have an amazing palliative care team that I visit monthly. Through palliative care, I also have a therapist who specializes in patients with advanced illnesses. Working with her, I have learned to manage survivor guilt and cope with the challenges of being homebound during the height of the COVID-19 pandemic. Finding solace in writing, I started a blog a year after my diagnosis. Whether sharing health updates, personal milestones, or advocacy events, writing helps me sort through the thoughts that sometimes plague my sleepless nights. It’s truly been a therapeutic tool throughout the years. 🖊️🧡

Q&A – How can individuals with metastatic breast cancer prioritize their mental well-being? Are there specific therapies or practices recommended for coping with survivor guilt?

Connecting Through Shared Experiences: Finding Strength in Numbers 🤝🌍

There’s immense value in connecting with others who truly understand the unique challenges of metastatic breast cancer. While I initially joined some social media groups after my diagnosis, I realized they weren’t the right fit for me. However, now, nearly nine years later, I highly recommend organizations like Living Beyond Breast Cancer. Their website offers resources for all individuals living with breast cancer, regardless of gender, treatment status, or stage. They provide one-on-one peer support through their support line, matching people with similar diagnoses or helping them find local resources. Talking to someone who truly comprehends our experiences can make an enormous difference. Unless you’ve walked in our shoes, it’s challenging to genuinely empathize with the daily realities faced by metastatic patients. Together, we can find solace, understanding, and strength. 💗🌟

Q&A – What are some support organizations or communities available for individuals with metastatic breast cancer? How can I find local resources tailored to my specific needs?

Recharging the Batteries: Embracing the Value of Rest ⏳💤

Living with metastatic breast cancer doesn’t always come with visible signs of illness. Often, I need to remind my family and friends that I’m not always operating at 100% and require time to rest. Granting myself grace and allowing for downtime has made life easier to navigate. It’s okay to decline invitations or opt-out of social outings. Those who truly care will understand and support our need for self-care. Having lived with this condition for nine years is undeniably a gift. I cherish every moment and make myself available to others who seek advice or simply need a listening ear. I strive to be the person I wished I could have turned to during that overwhelming first year. 🌼💝

Q&A – How can I effectively communicate my need for rest and self-care to my loved ones? Are there specific strategies or coping mechanisms for managing the emotional weight of a metastatic breast cancer diagnosis?

Conclusion: A Beacon of Resilience and Hope 🌈🤗

When I first heard the words “metastatic breast cancer,” I was completely clueless. If I could travel back in time and speak to the newly diagnosed version of myself, I would assure her that she’s not alone, even when it feels that way. I would tell her that there are countless individuals like me, waiting to embrace her with open arms. Gratitude fills my heart for the numerous individuals I’ve encountered throughout my journey. I’ve formed deep connections with a few incredible souls and have even shared memorable adventures with them. Each person who has crossed my path, knowingly or not, has taught me a valuable lesson. Collectively, we embody resilience, fostering an unbreakable community of hope. You’re never alone in this battle. We stand arm in arm, brighter together. ✨💗

References 📚

  1. Breastcancer.org: “Aromatase Inhibitors”
  2. Medline Plus: “Exemestane”
  3. Mayo Clinic: “Lumpectomy”

Share this empowering article with those who need it! Share your thoughts, experiences, or questions in the comments below. Together, we can make a difference! 🌟💬