The Miseducation of Metastatic Cancer
My grandmother taught me a great many things. She taught me to watch for hummingbirds, while sitting quietly under a feeder of water and sugar. She taught me to love classic movies and music that no one else my age knew (their loss). She taught me that the strength of a woman can dominate a room, and that sports are for women every bit as much as a man. She taught me that bravery is not loud and boastful, but quiet and personal. Surviving is what we do because there is no other option. And loved ones will look to you for courage when you are hurt, so protect them by showing no fear.
My grandmother died in 2009. Her death was not pretty, nor serene. Her children tried to shield me from it, but the kid gloves weren’t necessary. The woman I knew could never be erased by an ugly end.
Metastatic cancer riddled my grandmother, though few ever knew it. Sure, we knew of the breast cancer. Her family had been picked away by the disease. Her fight had been long and, sporadically, successful. But none of us knew the extent to which it had spread. Not until after, did we learn it had taken over her body. This is the evil of metastatic cancer, though I did not have a name for it until recently. That’s the problem with mets (the shorthand for metastatic cancer). Awareness and education is minimal.
What does “metastatic” mean? Metastatic cancer is an advanced stage of cancer (stage iv, there is no stage v) that has spread to other organs or parts of the body than it originated. The most common places for the cancer to spread are bone, liver, and lungs. So, when someone has metastatic breast cancer, the cancer originated in the breast (the primary site) and has spread to another part of their body (the liver, for instance). The cancer cells in the new part of the body will have many of the same characteristics as the primary cancer cells. Metastatic cancer is not the same as having a second, primary cancer, and is not always the same as recurrence. Metastatic refers to the location.
I learned a lot about metastatic cancer in the #BCSM chat that I lurked in on Monday. Vocabulary was a big topic of conversation. For instance, mets is often referred to as “chronic.” This is a term that causes a lot of animosity and is a major misnomer. Chronic, implies that a high percentage of patients will live long lives with easy treatments and good quality of life. Not true with mets. The median survival of metastatic breast cancer is two years. The treatments, when possible, have many difficult side effects. Each individual case of cancer is vastly different from the next, and quite unpredictable. There is no cure. Using words like, “chronic,” and “manageable,” may be an attempt to ease the fear. A metastatic cancer diagnosis is not tantamount to a death sentence, but, as one woman put it during the chat, “I may not die from [mets], but I will die WITH it.” Most participants agreed that “chronic” is something they yearn for, though it is not where we are currently. This sugar-coated terminology is not furthering awareness or education, and it does not make living with the disease any easier.
Cancer awareness campaigns focus on finding tumors early. Early detection = better chance of survival. It’s a narrative we hear often. I’ve preached it, myself, on this site. But finding cancer early does not eliminate the possibility that it will metastasize. The potential for metastasis is there, even in the earliest stages of cancer. Furthermore, those with mets do not necessarily “look sick.” Many have no symptoms at all when the tumors are found.
There is a lot of misunderstanding with metastatic cancer. We all want to believe that cancer can be “beaten,” but mets can’t be. There is no cure for cancer.
So, what do we do? The medical community and awareness campaigns use the same kid gloves my family attempted to use on me with my grandmother. They want to shield us from the ugly reality, but that doesn’t help us. Instead, we are left with some real gaps in our awareness of metastatic cancer. We need to face facts and learn more about the disease that is killing so many. I’m trying to educate myself, so I can educate others. This is my rudimentary start. I encourage you to educate yourselves, too.
For further reading on metastatic cancer:
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