Community Shares: What You Wish People Understood About Metastatic Breast Cancer

Living with a metastatic breast cancer (MBC) diagnosis means many different things. Too often, those on the outside fail to understand the full impact of MBC on all aspects of life.

To learn more about how community members are handling this lack of awareness, we turned to followers of our Facebook page. We asked you to fill in the blank in this statement: “I wish people understood that metastatic breast cancer ____.”

Your responses highlighted how deeply you want this disease to be taken for its seriousness. One member summed it up nicely, “It needs more research, not ribbons.”

Life changes with metastatic breast cancer

Metastatic breast cancer is a major life change. It affects all aspects of life. Days are planned around doctor appointments and energy levels. The amount of energy for activities can change on a dime. It is hard for others to understand or acknowledge the seriousness since MBC is often an invisible illness.

“Scans, treatments, and oncology visits every 3 months are a part of my life.”

“It is mentally and physically exhausting even on good days.”

“It isn’t contagious! You can still treat me as before.”

“It sometimes doesn’t look like much on the outside but is wreaking havoc on the inside.”

“It means we deal with the side effects of lifelong treatment and we have to adjust to our new normal. Many of us discover our true selves after diagnosis.”

“It affects your family.”

Learning to live with metastatic breast cancer

MBC will never go away. It can be treated and managed, but it will be present in the body forever. It can be exhausting and painful. Treatments can be expensive and out of reach financially for many who are uninsured or underinsured.

“It is not a curable cancer. You are in treatment for as long as you live.”

“It costs so much money to treat! Verzenio co-pay per month is >$600-$1000. No grants are available. I can’t afford this!”

“It causes pain.”

“It is a life sentence, not death.”

Understanding the depth of this cancer

While metastatic breast cancer has “breast cancer” as part of its title, it has specific differences from other forms of breast cancer. Other types of breast cancer are contained in the breast. In many cases, it can be put into remission or cured with a variety of treatments.

MBC is when those cancer cells have spread and are found in a variety of places not limited to the breast. MBC most commonly spreads to the bones. Once the cancer has spread, treatment becomes much more challenging.

“It is different from early-stage breast cancer and not everything will be fine.”

“It is not breast cancer again. It is not going away.”

“It is the stage of breast cancer that is terminal.”

“It isn’t the "good" kind.”

The emotional toll

Life with MBC is hard. Many of you shared finding reasons to embrace life and hope. Others of you shared struggling with the enormity of what this diagnosis means. Both responses are very real, and both are right. Having a terminal diagnosis can feel overwhelming. It forever alters your life.

“A reason to live even more than ever.”

“It is unfortunate and unforgiving and sad.”

“It isn’t the only thing about me.”

“It is a lifelong battle, but you can make the best of life!”

“It is a relentless, vile thief that takes and takes and does not care. You never have peace of mind again!!”

“It’s a hard pill to swallow. You try to think positive, but it’s hard at times.”

“It never leaves your body or your mind. It is the beast snapping at your heels.”

Thank you to everyone who took the time to share with us. We appreciate the honesty of your responses.