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Community Shares: Misunderstanding Metastatic Breast Cancer

Breast cancer and metastatic breast cancer are not the same things—and this is only the beginning of what many in the community wish people understood about their diagnosis.

Because the misunderstandings about metastatic breast cancer are so great and so varied, we wanted to shine a light on them. We reached out on the AdvancedBreastCancer.net Facebook page, and we asked you to fill in the blank: “I wish people understood that metastatic breast cancer is_____.”

Nearly 60 of you shared, and here is what you had to say.

MBC is a terminal illness

The hardest part of metastatic breast cancer is that it is terminal. The survival rates for stage 1 and 2 breast cancers is different than it is with metastatic breast cancer. Several of you shared that you do not enjoy it when people express wishes that you get well because there is no getting well for you. Granted, most people do not understand that this form of breast cancer is not what they are used to, so they may not know what to say.

“Terminal. I may be in remission, but I am living with side effects from treatment. We choose to live in the moment and make memories.”

“Terminal. There is no cure and no possible remission for me.”

“Terminal and that there is no cure and that early detection will not save those with MBC.”

MBC is not curable

Metastatic breast cancer has no cure. Nor is it receiving much research or funding, which may change as more people understand the severity of it.

“Not curable. I will never be in remission. I will never be done with treatments.”

“Incurable, yet receives less than 7 percent of all funding for breast cancer research!”

“Incurable but livable.”

MBC treatment is forever

For many people, living with metastatic breast cancer means the treatments do not stop. On the one hand, it is a blessing that treatments keep the disease at bay, but, of course, it is hard to constantly rely on treatments. But, many of you have found acceptance. Life changes and you learn to make peace with your new normal.

“I will have to take some form of chemo for the rest of my undetermined life.”

“My treatment WILL NEVER END.”

This is not the end for me

Many of you also pointed out that metastatic breast cancer has no cure, but you can and do keep living with the diagnosis. Many of you are doing OK, and are making the most of every day from here on out.

“Definitely is not the end.”

“Not the end for me! I am still thriving after 5 years.”

“Is not the end. I may have to take medication for the rest of my life. But one year into this and no sign of cancer in my body.”

With MBC, I am not the same person as I was before

Several of you shared that you are not who you were before you learned you had metastatic breast cancer. Some of you are grieving the life you had expected to have. Some of you are also more tired and find that physical tasks are more challenging. Some of you also appreciate who you have become — someone strong and grateful, who knows how to enjoy life.

“We grieve the person we were and hoped to be!”

“I am not the same person as I was before, but I like to think I am a better person than before my diagnosis. You find out what really matters in life.”

We want to say thank you to everyone who shared their perspectives on this story. Thank you for making our community a safe place of caring and connection.

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