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“Dear Breast Cancer Survivor” by Margaret Young – A #MetsMonday Featured Post

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.

Most sincerely,

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?

Dear breast cancer survivor, a #MetsMonday Featured Post by Margaret Young #breastcancerawarenessmonth #MBC #metastaticbreastcancer

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.

Secret Agent Woman

Monday 25th of October 2021

Amen. I don't call myself a survivor. I know that I am in remission and it could come back. And I say that when people ask. I remember someone saying to me when I was in chemo, "You're going to beat this, right?" And I said, "Well, I'd prefer not to die but I don't have a lot of control over that." Sure, I rang the bell at the end of chemo - it was a relief to be done even if I might be there again at some point. But I see it as a reprieve, an acknowledgement that I'm done with active treatment for now. I know my oncotype score and I think I'm pretty realistic about my odds. I don't see the point in sugar coating it. The whole pink ribbon, fight-like-a-girl BS makes me crazy. I think the effort to make breast cancer cute and fun is a disservice to all of us but especially a kick in the teeth to those with MBC.

Margaret

Monday 25th of October 2021

@Secret Agent Woman, I like your response to that comment! There's only so much we can control. There are some studies on reducing risk of recurrence but there is definitely so much that we don't control. I hope you never see the inside of the chemo room again!!!

Bonnie

Friday 22nd of October 2021

I consider myself a survivor because I am alive today. The National Cancer Institute says a person is a cancer survivor from the time of diagnosis until death. So even if it comes back, I will still be a survivor until I die. That said, I think much of the Pinktober hoopla trivializes this awful disease. There is NOTHING pretty or pink about even early stage breast cancer and there is certainly nothing pretty about MBC. And my doctors have never said I'm cancer free. They've said they got clean margins. They said there was no lymph node involvement. They said the prognosis is good. But they've also shared the recurrence statistics. For that reason, I have never said I'm cancer-free--because we just don't know for sure.

Margaret

Monday 25th of October 2021

@Bonnie, yes, the NCI & for that matter other cancer medicine organizations do use survivor & survivorship in their literature & guidelines. I get it but I also don't like it :p I wish you infinite years of NED

Ninon

Wednesday 20th of October 2021

Dear Margaret ! This really nailed it for me. You write it all so well and your dialogue scenario is right on. When I was diagnosed with triple negative BC stage II, I was terrified (odds presented to me with me about 5 yr survival were not good). I received the usual treatments and am currently NED. Never used or liked the word ‘’survivor’’ and never even thought of the expression ‘’kicking a…’, since I thought IT was kicking MY a… I am still amazed at how much public figures use these. This is one of the first things the cancer heroes around me tought me: that BC was deadly and that we were all at risk of recurrence. And their ‘’ hero’’ status had nothing to do with having survived treatment. They just happened to be great women who had had BC and helped me tremedously to get through the treatments and also deal with the reality of what could come. One of my heroes in now MET (for 4 yrs) after 20 yrs of beging well. Another friend died of TNBC just 2 yrs after diagnosis, and on it goes. There should be no division amongst all affected by BC since it’s mostly luck that determines where it takes us. I support my MET friend as best I can (from afar) and I know very well this could be me soon, later or hopefully not before I die old of something else. I give her example to explain to folks who diminish (not always consciously) the seriousness of breast cancer, the ‘’good’’ cancer as they say. We early stagers cannot take anything for granted and need to advocate. Living in gratitude of every day is another story. Research for treatment of MET is what is required. Early detection and screening is good but effective treatment options for metastatic breast cancer is harder to attain and requires all of our efforts. Thank you for writing this and sharing with us.

Margaret

Monday 25th of October 2021

@Ninon, Thank you so much for sharing your insights and your experience with living as a TN NED. "There should be no division amongst all affected by BC since it’s mostly luck that determines where it takes us." I think this gets glossed over so much. I mean some of us might have access to a clinical trial which might give us better odds, or a more gifted oncologist who treats with a more aggressive oncologist, but assuming that all of us are getting evidence based treatments, the rest is very much luck... I wish you endless years of NED!

Diane

Tuesday 19th of October 2021

I don't feel like a survivor. And I hate when people call me that. I am one of those "early stagers". But there isn't a day that goes by that I don't think about the cancer returning. There isn't a day I don't feel guilty about having a so-called easy cancer. And what Michelle wrote holds so many truths. Cancer for all of us is scary.

Margaret

Wednesday 20th of October 2021

@Diane, The survivor label is pretty ubiquitous in our culture, isn't it? Hard to get away from it. And yes, the little niggling fear is always there though I think I did put it out of my mind for most of the 2yrs of remission I had. I figured we do what you can to prevent recurrence, and then, it's out of our hands. No point in borrowing tomorrow's troubles... Best wishes to you

Linda

Tuesday 19th of October 2021

Dear early Cancer Survivor who visibly tensed up when I told you I am Stage 4: Please advocate for me! I know you're fearful even if you don't say so. If you Advocate we might find something that will continue your survivorship and give me a chance.

Margaret

Tuesday 19th of October 2021

@Linda, oh yes, the sucking in of air, the tensing, the whole 'get away from me, you're my nightmare' ... yeah. It's there, we sense it, don't we :(

you're right; if we don't face those fears and talk about them, then we don't convey the seriousness of the disease and the urgency for a cure.

thanks for posting. hugs

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