Summary:
Patient advocate and cancer warrior, Megan-Claire Chase shares her top 5 lessons learned as a breast cancer patient in recognition of October’s Breast Cancer Awareness Month: Cancer is more than just fun runs and pink tutus, young people get it too, metastatic breast cancer still has huge unmet needs, while helping others is important as a patient you have to prioritize your own self care, and cancer can change you. She concludes with one, empowering message: our stories matter.
My reflections on Breast Cancer Awareness Month: No Longer A Breast Cancer Novice
I could write a dissertation on what I’ve learned about breast cancer in the past five years since I was diagnosed. Instead, in recognition of Breast Cancer Awareness Month, I’ll focus on the top five things I’ve learned on this incredibly difficult yet rewarding journey with an aim to raising awareness about the things that matter the most to patients living with this disease.
1. Breast cancer is not just pink tutus: I did not realize there were so many different types of breast cancers. I truly feel the whole “Breast Cancer Awareness” in PINKtober has done a major disservice to us. Before I was diagnosed, it never clicked that breast cancer was difficult or that you could die from it. I also didn’t realize that men can get breast cancer. Where are their resources and support? Many organizations and even cancer centers are so focused on making breast cancer “pretty.” We’ve been brainwashed into thinking it’s all about walks, pink, tutus, big smiles, older women, high-fives, and laughter. It was a heavy dose of reality when I discovered how scary, painful, emotional, and tough the journey would be during active and post-treatment.
2. Young people get cancer, too: Since I was diagnosed under 40, I did not realize how difficult it would be to find both local and online support for those in my age group. I was often the youngest person in the infusion room. Over the past three years, I’ve been able to find fantastic online support for young adult cancer survivors through organizations like Elephants and Tea and Lacuna Loft. A delightful and unexpected surprise has been discovering the cancer community on Twitter. Though the idea of Twitter can appear overwhelming, I’ve been able to connect with other cancer patients from all over the world and develop a rapport through posting regularly. Plus, there are many private support groups on Facebook. Some are more targeted to your specific type of cancer and there are some general groups where it’s all different breast cancers coming together. I continue to learn so much in all these groups, ask questions, and make authentic friendships.
3. Metastatic patients will live with cancer for the rest of their lives: I’ve learned so much about Stage IV Metastatic Breast Cancer (MBC). The first time I heard the term metastatic was in the breast cancer Facebook group Knowledge is Power. Metastatic means that cancer has spread to other areas of the body, such as the brain, bones, lungs, and liver. It is scary but also extremely important to learn about it and to keep monitoring your body. Every breast cancer patient will feel survivors’ guilt at some point in their journey. As I made friends in the cancer community, there is a sad reality that many of my fellow pink sisters are in treatment trying to prolong their lives but know they will ultimately die from metastatic breast cancer. I had never experienced much death in my life before cancer. I have lost many friends whose stories I had followed and connected with on a personal level. Their deaths remind me how fleeting life after a breast cancer diagnosis can be. The fear of the unknown and getting scans every six months really makes me live life with purpose and be very intentional in all I do. I will never declare I am cancer-free. I always use the term No Evidence of Disease (NED) because I don’t know if the cancer is truly gone.
4. Give what you can but take care of yourself first: It’s important to push yourself to build strength but also know your new physical limitations. When you become a trusted voice, you are often pulled in many directions with organizations and other patients, survivors, and family members wanting your time and energy. You learn early on that you must make your health the priority. I strive to shine a spotlight on the issues I’ve dealt with and gaps in care that I see and share my viewpoints. In doing that, I never sought out to become an inspiration to others. It organically happened. I want everyone in the breast cancer space to know that their voice matters. Their stories matter. It is a patient’s right to seek and receive the best care possible. I’ve learned it is important to speak up and help empower others during an often scary and confusing time. No one should go through this experience alone.
5. Cancer can change you: When getting a breast cancer diagnosis, the trajectory of your life abruptly halts and pivots. It is rare to come out of treatments unscathed. Many often emerge differently and priorities shift. I see now that I was holding myself back from taking needed risks in life and career. I played it too safe. Getting breast cancer pushed me into thinking outside of the box and pursue things I never thought possible before. If anyone had told me I would become a cancer blogger, advocate, young adult influencer, researcher, and speaker, I would’ve laughed. I’ve learned that many of us have hidden talents that are only forced into light after trudging through the darkness of multiple surgeries, harsh treatments, and side effects.
It’s so important to arm ourselves with knowledge, be our own advocates, and lean on others for support. It’s our right as patients/survivors to ask questions of our medical team and have an active voice in our care. After all, it’s our lives on the line. We matter. Our stories matter.
About the author:
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.