Overexpressed Asks: A Series Featuring the Voices of MBC

Last fall when I needed to make an difficult decision about my next line of treatment, I connected with AMELIA O’RELLY. Wonderfully warm and supportive, she opened up to me about her MBC journey and what her life is like on Enhertu.

Making difficult decisions about cancer care is one of the many challenges of living with MBC so talking with someone is invaluable. Inspired by Amelia O’Relly’s advocacy, her warmth and humor, and her willingness to share herself with the MBC community, Overexpressed Asks is honored to highlight her voice.

Using a metaphor or simile, describe your MBC journey.

My MBC journey is like a hike through the mountains, at times it feels all uphill, through steep and roughed terrain, and then suddenly you arrive at a clearing, and for a moment, all is calm, quiet and beautiful, and you realize how far you’ve come. 

Using words and phrases, describe what it is like to live with MBC. 

It is like having a sixth, seventh and eight sense….you are keenly aware of your body, of what truly matters and who’s truly present with you.

What is one word/idea used in describing MBC that you appreciate? In two sentences, describe why.

The notion that it is not always about “living with cancer,” it can be about “managing cancer.” There are many MBCr’s that obtain and maintain NED (no-evidence of disease) status for many, many years, and to me, they’ve reached the clearing in the climb, where the cancer has “moved out” so to speak, and thus, they are no longer “living” with it, they are “managing it.”  

What is one MBC word/idea that you would like to see changed? In two sentences, describe why this change is so important.

The patient experience for MBCr’s needs to significantly improve. We need far better ideas and scientific progress around treatment customization that minimally includes: a less “cookie-cutter” cadence of treatments, tailored dosing guidelines, higher standards for side-effect management, quality treatment plans measured on effectiveness, sustainability, and high quality of life (vs. solely measuring “lifespan”).

What would you like people to stop saying or doing after they find out you have MBC? Or what would like to say to people who do not know what MBC means? 

For me it is more about what people should be doing vs. saying. I would like for more people to develop a curiosity and genuine interest about MBC and get involved to improve the patient experience, for everyone touched by the disease.   

What do you know now that you did not know when you were first diagnosed? 

I did not even know what “metastatic breast cancer” meant, much less the degree of complexity that the treatment journey entails for a metastatic breast cancer patient. While I truly appreciate all that is done for early detection/prevention, equally important is the need for more education and awareness of the metastatic journey, so that it can be less of a complete shock factor and abyss for those diagnosed (and their loved ones).

Register for LBBC’s Thriving Together: 2023 Conference on Metastatic Breast Cancer

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