Community Member Spotlight: Stephanie M.
Here at AdvancedBreastCancer.net, we want to spotlight those affected by metastatic breast cancer. Through our community member spotlight interview series, we had the honor of hearing Stephanie's story. Since her spotlight interview, Stephanie has become an advocate for AdvancedBreastCancer.net.
How & when were you diagnosed with advanced or metastatic breast cancer?
I was diagnosed with mets when I was 31, six years after my initial diagnosis. I was a hairstylist for about 8 years pre-Covid. Our salon shut down, and I was quarantined with my kiddo. I took a nap on my couch one day and my shoulder has never been the same. My muscles were tight, and I thought it was just a repetitive stress injury. I got an X-ray, and it didn’t show anything, so I continued my normal life.
When I went back to work after the shutdown, however, I was having a hard time moving my arm and discontinued blow drying (which was met by the MOST intense ableism I have ever experienced). I went to physical therapy, and we thought it was a frozen shoulder. My physical therapist was really skeptical, and for good reason, because she pushed me to finally get an MRI, which showed my right humerus fractured due to the spread of the disease.
The doctor that ordered the MRI was already on the phone with my oncologist, and she kept saying “lifelong care”.
That was in November of 2020, and I hit the ground running after that. We scheduled scans and biopsies and finally got on the books for surgery in January. Since then, I’ve had my major surgery, and intense radiation, my ovaries have been removed, and I’ve only been on one line of treatment so far.
What different types of information and support were most helpful when you were newly diagnosed?
When I was newly diagnosed the first time I immersed myself in the information. I really liked the YSC at the time, although I felt like I wasn’t necessarily in that category. The second time, I immersed myself in the MBC community, and it has helped a lot.
When I was diagnosed the first time, any and all information was welcome. Now, it overwhelms me. I think the difference between then and now is, that I have my partner with me. Now I can bounce ideas around with her and have plans in place prior to my oncology meets. It really changes the game, having someone with you all the time, because I cannot retain information very easily. We are constantly on the same page, and my doctor is also.
Being a part of the community really helps as well because it can feel isolating at times, knowing so much about one disease. I am not alone in scanxiety, googling MyChart results, and watching videos on surgery. It helps to know that!
What are your favorite part(s) about AdvancedBreastCancer.net?
The website is so well thought out. I love how easy it is to navigate, and easy to find the information that you want to take in. The stories are raw, and real, and from real people. I really appreciate that, because I’m not here to sugarcoat my experience, and neither is anybody else it seems! I like that you can interact with people too. That is super important to me on my socials because the bottom line is connecting with people.
Please describe how online support has helped you?
The day I got re-diagnosed, I was surrounded by people. Everyone piled into my little house and filled it with so much love. At the time, I kept my socials private and did not post a lot online.
That has changed immensely over the past couple of years.
People have come and gone, but I opened up my life on social media, and the response and support I have gotten since then have been unmatched. I’ve gotten to connect with some really amazing people, and have actually met some of them in real life in my travels! I truly hope to continue to fulfill this sense of community in the future and be a little light on my corner of the internet.
Is there anything else you'd like to add?
It’s wild to me how different my first experience with BC was. I had absolutely nothing to lose, I was young, and I rocked it out. This time around, however, I have so much to lose. My amazing surprise baby, my wife, this beautiful life I’ve created for myself. I’ve opened up my life to not only have it be a creative outlet for myself but in hopes that someone somewhere will read something I have to say and feel a little less alone.
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