1. MBC is still breast cancer

Metastatic breast cancer means cancer that has spread from the breast and local area around the breast and has been found in other parts of the body.  When breast cancer is found outside the breast, it is still made up of breast cancer cells and still called breast cancer, not liver cancer or bone cancer. Breast cancer metastases still responds best to breast cancer treatment and even better when the treatment is targeted to the specific type of breast cancer. The most common metastatic sites for breast cancer are liver, bones and lungs.

2. MBC is not curable

Photo courtesy of Tyler B.

Unlike localized breast cancer, there is no cure for MBC, but it can be managed with treatment as a chronic disease.  Treatment for MBC is often focused on managing symptoms with the hope that the cancer disappears for as long as possible. This is called NED (no evidence of disease) and the cancer is not seen on a scan, but may still be in the body undetected. Those who live with MBC are scanned regularly and the best news they can receive when they get their results is NED or STABLE which means the disease is evident but hasn’t progressed.

3. MBC has its own language

Photo by Worthy Of Elegance

Some call is mets, others call it stage IV cancer or incurable cancer. In the UK they call it secondary breast cancer and some people call it advanced cancer. Although MBC is actually advanced cancer, advanced breast cancer can also refer to some stage III cancers that are not metastatic. There is a big difference here and understanding the language behind this stage of the disease is important.

Here is a cheat-sheet for mets lingo:

MBC: Mets, Stage IV, Secondary Breast Cancer, Advanced Breast Cancer, Incurable Cancer

NED:  No evidence of disease (in the past this was called remission)

Stable: Scan results show that disease has not progressed (the cancer has not grown or spread further)

Scan: MRI, CT, Mammography, PET, Ultrasound

Low counts: sometimes ongoing chemotherapy treatment can cause low blood counts which means they may need to stop treatment for a while or switch to another therapy.

4. MBC is breaking away from pink ribbons

symbol It’s important to note, those living with MBC often feel alienated from their fellow “survivors” and don’t identify with the pink ribbon dogma:  if you fight hard enough you can win the battle with breast cancer. This mantra doesn’t resonate if you are living with breast cancer for the rest of your life. Metastatic advocates and organizations like METAvivor and MBC Alliance are purposely not using pink and new symbols are being created for campaigns that focus on access to treatment and services for those with MBC. The symbol above was created for the MBCTime campaign this past October.

5. What those with MBC want you to understand

Those with MBC are often taking some form of treatment for the rest of their lives. This can can be in the form of full-on chemo, oral meds or injections. They are constantly having to balance their treatment with their quality of life. For instance, if the chemo regimen they are on is causing side-effects that make them feel ill, they may have to assess whether it is worth the time they spend feeling sick and prolonging their life by x.

When treatment doesn’t make them ill, they often look just like any “normal” person. Their hair may have grown back, they have energy and they may even go back to work. However, they are not “better” in the sense that the cancer has gone away.  FOr the most part, they are just living their lives as normally as they can, for as long as they can while the cancer is under control.

For more on MBC click HERE.