Self-Advocacy When Living With MBC

“I’m sorry to say, but you have metastatic breast cancer.”

Whether this comes months or years after an early stage breast cancer diagnosis, or maybe you’re stage IV from the get-go, these words echo in your ears for the rest of your life. How do you pack years of living into a condensed life, yet have zero clarity to the length of time you truly have?

I remember that day with such clarity. That division of my life from curable to suddenly having a statistically grim probability of living until I was 30. Suddenly my life as I had known it for 28 years became foreign and unknown.

After the initial shock, complete sadness, and too many 2 a.m. Google searches, I realized I could arm myself with information. I could be a partner in making shared decisions with my healthcare providers and not wallow or let the immense burden of the diagnosis consume me. I realized I had no choice in the disease, BUT I had a choice in the treatments, and It was my responsibility to tell my healthcare team what was important to me, my life, and my values.

That’s why I’m sharing my MBC Self-Advocacy Resource. As a registered nurse, I had professional experience helping patients and families navigate the healthcare system.  After my MBC diagnosis, I had to change lanes and start advocating for myself. And now I hope my experience will help you too.

Don’t ever forget when you are diagnosed with MBC that your voice matters just as much as your physicians, and don’t ever feel scared or ashamed to have honest and open conversations with your oncologist.

XO. Judit