I’m not sure exactly why the topic of metastatic breast cancer is so neglected. Obviously, it’s a tough topic, but that doesn’t mean we shouldn’t talk candidly about it. We can’t just sweep it away or dress it up nicely in pink.
For clarification purposes, recurrence and metastatic breast cancer are not necessarily the same thing. A recurrence can be local, regional or distant.
A local recurrence means the cancer has come back in the breast, or in the scar (in case of mastectomy).
A regional recurrence indicates the new cancer is in the lymph nodes of the armpit or in the collarbone area.
Metastatic breast cancer means the cancer has spread to other organs of the body typically the bones, lungs, brain or liver. This is also referred to as distant recurrence.
A diagnosis of any of these is, of course, devastating though treatment and outcomes are not the same for all.
When you hear the words, “You have cancer,” you might think you’ve heard the worst three words you could possibly hear in regard to your own health. In reality what’s far worse is hearing the words, “Your cancer has come back or your cancer has metastasized.”
Roughly 25-30% of women diagnosed with breast cancer, will have a recurrence at some point. Each year around 40,000 lives are lost to metastatic breast cancer. The fact remains that two years, five years, ten years, even twenty years passing does not guarantee that a woman (or man) is in the clear for good.
Despite these statistics, words like recurrence, metastatic breast cancer, stage IV and incurable often remain unspoken. They are “heavy” words. Even bloggers like me often hesitate to write about them.
Why is this?
The biggest reason in my view is fear.
Facing a recurrence or metastatic cancer of any kind, even as a possibility, is scary and hard; but this is also exactly why we do need to talk about it.
Perhaps subconsciously we feel if we just keep quiet, it won’t happen to us or our loved one. Of course, we all know this isn’t true, but the mind works in mysterious ways.
Another reason might be because we don’t want to offend those already living with metastatic breast cancer. There is a certain amount of guilt involved when you know others who are living with mets and you are not. Again, this self-imposed guilt makes no sense, but that doesn’t mean we still don’t feel it.
One huge reason many of us hold back and don’t speak of recurrence or metastatic breast cancer is to protect our loved ones. Facing cancer once is bad enough for everyone. No one wants to think of putting loved ones through it a second or third time.
Another discussion barrier is that people often automatically equate metastatic breast cancer with a death sentence. While it’s true there is no cure, metastatic breast cancer is treatable. It doesn’t mean the person will be gone in X number of days, weeks, months or years.
We can’t just “write these people off.”
And while this is true, it’s also true that talking about metastatic breast cancer forces us to grapple with the topic of death, and in my opinion, society “doesn’t want to touch that one with a ten-foot pole.”
One thing I do know is this: just because recurrence and metastatic breast cancer aren’t discussed much, it doesn’t mean those of us with an initial diagnosis aren’t thinking about it.
Anyone who has had a cancer diagnosis thinks about recurrence, even if they never speak of it. Keeping quiet doesn’t equal not thinking about it.
This is not to say we dwell upon it, are pessimistic or live life in constant fear. That’s not the case at all.
In fact, this potential for recurrence is the exact reason so many people say they have been transformed (for the better) by cancer and live life differently after a diagnosis. Perhaps this is even why some (not me!) go so far as to call their cancer a gift.
On a related note, one of the biggest reasons so many of us in the breast cancer realm are dissatisfied with all of the October madness and the prevalent pink ribbon culture with its almost cavalier attitude, is because the mets community doesn’t seem to be included enough, or even at all.
Metastatic breast cancer doesn’t fit in very well with all the pink.
Metastatic breast cancer doesn’t fit in very well with the “everything’s going to be OK” message that is often conveyed via all the well-intentioned pink hoopla.
Metastatic breast cancer is not the reality October wants to “talk about.”
Still, metastatic breast cancer is a reality to many. There are about 155,000 men and women living with metastatic breast cancer.
We owe it to them and all those lost to it to talk about it, even if it’s hard.
Not talking about it is just plain wrong.
Why do you think the topic of metastatic breast cancer is often so “off limits?”
Have you had a recurrence or do you know someone who has?
Are you living with metastatic breast cancer and if so, what would you like people to know about it?