Community Shares: Communicating Metastatic Breast Cancer to the World

Metastatic breast cancer (MBC) is a diagnosis no one wants to hear. Whether as a recurrence of breast cancer or a new diagnosis, it changes your life. The wider community can misunderstand MBC. It can also be confusing to those newly diagnosed.

To learn more about how you share your journey with others, we turned to community members. We asked followers of our Facebook page to tell us:
“If you could tell the world one thing about MBC…what would it be?"

What others need to understand about MBC

From insight on advocacy to MBC’s never-ending challenges, your responses were emotional and thoughtful.

• "Be an advocate for more research and funding because clinical trials find treatment successes. Be part of a support group to assist and learn from other MBC patients. The women and men of (my) support group have given me so much confidence and knowledge about living with MBC."
• “It’s a constant stay of execution from the warden.”

Here is more of what was shared by our community members.

It is never going away

MBC is not the same as breast cancer. In this form, also known a stage IV, the breast cancer cells spread to other parts of the body. Most often, the cells spread to the bones, liver, lungs, or brain. MBC can be treated and managed, but the diagnosis is forever. You shared how daunting this feels.¹

• “It’s not breast cancer AGAIN, and in my case (2 spots on my spine), it’s not bone cancer!”
• “You are not healed and in the clear just because your hair is back and you are done with chemo. It’s a new normal forever.”
• “You might think I look fine, but what you don’t know is that every day I am fighting for more days. My fight will end only when I have no more fight left in me.”

There is no cure

Breast cancer and MBC also differ, as MBC is not curable. Many of you reflected on the physical and emotional struggle of living with incurable cancer. Treatments are ongoing, and life revolves around managing this disease.

• “You are forever in treatment! It is, for now, incurable cancer.”
• ‘The unknown and constant worry about progression can be torture sometimes.”
• “It is not a death sentence, but there is no cure!”

Live your life

Even in the face of an overwhelming diagnosis, you focus on the importance of embracing and living life. There will be bad days, but when the good days come, you enjoy them! You do things that bring joy and fulfillment to your life. It is possible to live many years with an MBC diagnosis, and treatments are constantly improving prognosis.^2,3

• “I live each day to the fullest and pray for more time. Good scans are not a victory for me, they are a temporary reprieve for a life sentence.”
• “It’s very scary, but you still have to live your life day-to-day for yourself and your loved ones.”
• “Enjoy every day – if you can. I struggle ALL THE TIME but know what is most important to me. Making time for what I want is so important.”

We appreciate all who took the time to share your reflections with the community. Your honest sharing of life with metastatic breast cancer enriches the discussions. Thank you for being here.