It’s with pleasure I share the next #MetsMonday Featured Post, “Dear Breast Cancer ‘Survivor'”, by Margaret Young.
There has been continuing discussion of late in the breast cancer blogosphere and on social media about the divisions between early stagers and those with stage 4 disease. Divisions are unavoidable, I suppose. Nonetheless, this particular one I’ve never understood. More importantly, it likely hampers progress for all of us.
You might want to read, Walls We Build In Cancer Land.
Generalizing about any group or any person is never a good idea. Having said this, we all know there are some, hopefully not many, early stagers who for various reasons don’t embrace, as they should, their sisters and brothers with metastatic disease.
Margaret’s post is an open letter to those early stagers who perhaps are unaware how much late stagers need their help in Advocacy World. After all, we are all in this together. Or should be.
Be sure to share a comment or ask a question in the comments. Thank you, Margaret, for sharing your voice at Nancy’s Point.
Dear Breast Cancer ‘Survivor’
by Margaret Young
Dear breast cancer ‘survivor’,
Psssst, I need to talk to you.
Yes, you, the person who was diagnosed with stage 0, 1, 2 or 3 breast cancer and has finished treatment. Maybe you’re still coping with hormonal therapy, but the big ordeal is over, and you’re starting to breathe a sigh of relief.
We need to talk.
I know you’re uncomfortable with me, the metastatic stage 4 patient. The one who is slow-mo dying.
“I’m a survivor!”
How do you know?
“I kicked Cancer’s ass!”
How do you know?
“Cancer messed with the wrong b****!”
How do you know?
See the thing is, you don’t know. Yes, for the vast majority, once you’ve finished treatment for early-stage breast cancer, you are finished and likely to die of something else — hopefully, when you are very old and have lived a long and happy life.
But for anywhere between 0.1 and over 30% early-stage breast cancer patients, that’s not how it ends. Our breast cancer returns. It metastasizes. It spreads to our bones, lungs, liver, brain. And then it kills us.
You’re a survivor until you’re not.
I was there. I was with you — originally diagnosed with stage 1A, a “good cancer! Caught early!” I did my surgery, my chemo, my radiation; and when I was finished, I said I’m done with all this. I went back to living life. And then it came back. It came back furiously and fast, invading organs, and I joined the group of metastatic breast cancer patients where median life expectancy is still only two to three years and things aren’t pink and fluffy.
“I’m a survivor.”
You don’t know that. And what am I?
“I kicked its ass.”
Did you? And what do you think the ones who had a recurrence did? Half-assed their chemo?
Don’t forget everything you do in your early stage treatment is not for the cancer you currently have — that cancer won’t kill you, unless it metastasizes. So, what you are doing is trying to lower the risk of becoming like me. All the treatments are designed to reduce the risk of the metastatic spread, but we don’t know if they worked until you die in your old age of something else.
So listen, my message to you is this:
There must be a way for you in advocacy work to include those of us who are dying of metastatic disease, the ‘unsurvivors’.
And yes, advocacy includes telling people you’ve had breast cancer and are finished treatment. But, please remember that every time you speak, every time you post on social media, you are influencing others how to think about this disease.
If you think that awareness raising only needs to be about letting people know to “check your breasts!” “find it early!” and “get a mammogram!” then you do not have an understanding of the gravity of this disease, and you need to sit down and do more thinking.
Because finding it early is not a guarantee of success.
Remember the one to three women in a group of ten breast cancer patients for whom it comes back to kill.
If your advocacy programs and events, if your social media posts do not include the stories of death, the stories of metastatic patients who did everything right and are still facing a terminal diagnosis, something is wrong.
Whatever you do, whatever you say, imagine doing and saying it in a room full of metastatic patients.
Imagine saying it to someone who has been told that they’re out of treatment options and that they’re being referred to EOL care. Would you shake pink pom poms, would you joke about saving the ta-tas, would you just talk about how you need to be positive and fight, would you pass the cupcakes made to look like breasts to the young woman who is in her 20s or 30s and is dying of this disease?
We need YOU to advocate on our behalf because we are sick, because we are in treatment forever, because we are on chemo for life, because we are dying, because dead women don’t post on social media.
We need you to include the unsurvivors, the dead, the memories.
We need you to push for more research and funding specifically for metastatic disease. We need you to speak for the ones who are silenced by metastatic disease.
We need YOU. We really need YOU.
Please stop the pointless pinking, stop the ‘inspiring stories of surviving’ and let’s do concrete work to make death from this disease rare.
“I was treated for breast cancer. My team hopes I’m cancer free now.”
I hope so too.
Margaret, just another ‘Unsurvivor’
Do you have a comment or question for Margaret?
Why do you think so many early stagers turn their backs (unintentionally or not) on those with MBC?
Do you have a tip for how we can all better advocate for those with MBC?
BIO: Margaret has a degree in Political Science, worked for the federal government, and has been an International Board Certified Lactation Consultant since 2002. She was taking prerequisite classes for a BS degree in Nursing when she was diagnosed with Stage 1A breast cancer. Undeterred, she continued with her goals and even wrote an anatomy and physiology final exam between surgery and starting chemo. She began the BSN program while completing radiation treatment, and was in the middle of the program when she learned the cancer had returned and was now metastatic. She lives in Vancouver BC. She loves dogs and reading. Find Margaret online via her blog at nevertellmetheodds2017.tumblr.com and on Instagram as @itisjustastage.