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Those with Metastatic Breast Cancer Need More than Lip Service – They Need Action!

Those impacted by metastatic breast cancer want, need and deserve more than lip service during Breast Cancer Awareness Month and all year long, for that matter. Designating one day out of BCAM as National Metastatic Breast Cancer Awareness Day doesn’t cut it either (although it’s a start). Lip service is just not good enough. It never has been.

Lip service does not save lives.

In fact, lip service is like a slap in the face to those on the receiving end of it.

We all fall short. We all vow support of one cause or another. Most of us would certainly say we support women’s rights, animal rights, voting rights, or whatever the cause might be.

But how many of us move beyond lip service and actually do something to support causes we say we care deeply about?

Growing up as a daughter of a teacher, I learned about lip service early on. My family lived comfortably but modestly. Somehow, my parents made ends meet while raising four kids on a teacher’s salary. My mom got a job as the town librarian when I was in junior high, but librarians aren’t exactly known for being highly paid either.

Sometimes I’d overhear conversations between my parents about this very thing – lip service. They’d talk about all the stuff people were willing to spend money on hand over fist. Many of those same people didn’t see the need to spend more on kids and education. In fact, some felt too much was spent on those things.

Of course, everybody, okay, almost everybody, professes to support kids and education. But when push comes to shove, plenty of referendums fail. Plenty of schools slowly crumble. Plenty of kids go without. Plenty of outdated textbooks aren’t replaced. Plenty of teachers buy stuff out of their own pockets and many are forced to get a second job. Plenty of classrooms are too large. You get my point.

Too often support people profess to offer boils down to lip service. 

Now, let’s talk about cancer. Specifically, metastatic breast cancer.

Too often and for too long, those with metastatic disease have been getting lip service from far too many. Oh sure, when asked, most people would say they support those with metastatic breast cancer – if they know what it is. But reality tells another story.

What do I mean?

Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer. No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.

How in the world is this possible after more than three decades of Breast Cancer Awareness Month? 

(That’s right, this is the 33rd National Breast Cancer Awareness Month.)

This is a colossal failure, is it not?

For years, there’s been far too much lip service and far too little action regarding meeting the needs of those with metastatic disease.

Where has the sense of urgency been? Where is it now?

Action is needed, not lip service.

What might some of these actions look like?

For starters…

  • Breast cancer charities should allocate larger portions of dollars raised for research specific to metastatic disease or at least be transparent about how much money they raise and specifically what it is spent on.

  • When organizing charitable breast cancer events, organizers should invite, include and embrace women and men with metastatic disease too. Include them in ads and publications. Always work to represent the entire spectrum of this disease. Yes, the entire spectrum.

  • All players should make figuring out why some cancers metastasize while others do not, how to halt metastasis when it occurs and how to prevent it in the first place top priorities. Yes, top priorities. 

  • We should all demand that more dollars be spent on figuring out how to extend lives of those who are living with metastatic disease right now. And, of course, less harsh treatments should always be a goal as well.

  • Invite metastatic patients to the table at conferences and when possible, pay their way.

  • Work to help enable more metastatic patients to qualify for clinical trials.

  • All of us should listen to individuals who are living with metastatic breast cancer. When they share what they need (as opposed to what we think they need), believe them.

  • Talk about metastatic breast cancer every chance you get. As my friend Martha wrote in a recent piece:

    “Metastatic breast cancer is scary, but it is not so scary that it cannot be mentioned.” Amen!

  • Ask people, did you know? (Because most don’t.)

  • If you’re an early stager, remember it is, or should be, all for one and one for all.

So, those are a few actions I came up with.

I’d love to hear your ideas too.

After all, the group in greatest need, those living with metastatic disease, should be getting the most support, not the least.

Those living with metastatic breast cancer deserve more than lip service. So much more.

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What’s one super simple action you can do right now?

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Thank you.

October 13th is National Metastatic Breast Cancer Awareness Day. Spread the word!

Do you have metastatic breast cancer or do you know someone who does/did?

Cancer or no cancer, do you ever feel like you get a lot of lip service regarding something you care deeply about? How does that make you feel?

What specific action(s) would you add to this list?

Those with Metastatic Breast Cancer Need More than Lip Service

Big fat failure of BCAM, I’d say. What about you?

Those with MBC Need More than Lip Service!  #breastcancer #breastcancerawareness #metastaticbreastcancer

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Meredith Clark

Wednesday 22nd of September 2021

I'm responding to Lisa's comment "Survivors get to live waving their pink ribbons thinking they are free of cancer." So true; I've heard many women claim that they are cured. My dilemma is whether to burst their pink balloons and tell them that I have mets 23 years after two mastectomies, chemo and an excellent prognosis, or just let them live in fantasy land. Either choice seems kind of cruel.

Nancy

Thursday 23rd of September 2021

Meredith, Oh my, 23 years later you were diagnosed with mbc? I say, go ahead and burst the balloons. Women need to understand that the risk for recurrence doesn't go away. I prefer not to live in Fantasy Land. This is one area oncologists need to do better. They should be upfront about symptoms to look for and inform that the risk might diminish over time, but "cure" is probably a word best to avoid. Thank you for commenting. I hope you're doing well.

Linda Boberg

Monday 13th of May 2019

So . . . I have done the walks as a Stage 3 Thriver and, admittedly, paid little attention to the Mets people. I don't think I was thinking beyond my own little cancer world. But this past Fall I did a UCLA waIk because it was closer to home and I wanted to support. They had things for Mets patients and they asked anyone going on a cancer journey to come up to the front stage. We walked across, told how many years we were Survivors. Even the Mets people went up and I can't recall if they said how long they'd been Mets, but they were there. It was moving (and at the time), scary to think I could be a Mets person. But now that I'm Stage 4, feeling like I'm imploding, I will ONLY walk for orgs that do support research for Mets.

Beth L. Gainer

Monday 12th of November 2018

Spot on, Nancy. I feel that many, many people just offer lip service. As you know, my friend Faun died of metastatic breast cancer, and I'm so glad I could take care of her the way I did. I was a friend. And friends don't abandon friends.

So I would add the following to your list: Be there to support friends with metastatic breast cancer. Even if one cannot afford donating to a worthwhile charity, you can cook a friend meals, take her/him to chemo, etc.

Nancy

Monday 12th of November 2018

Beth, You were indeed a wonderful friend to Faun. I'm sure those memories are painful but also treasures for your heart. Thank you for the addition; it's so important.

Lisa

Wednesday 31st of October 2018

Interesting to think "Pink" is the fight against breast cancer and the battle to survive - and, if someone is going to die from b/c, it's pretty much because it had metastasized. The Pink Fight needs to be against metastasizing breast cancer and all the points you listed above (finding a way to stop the spread, helping mets survive longer, etc.). I'm 12 years out, 2 years metastatic on 2nd line of treatment. So, I beat those pink odds and made it to the magical 10-year mark, then found out I had extensive mets in several vertebrae, rib, pelvis, liver. So, 10-years cancer free? No - many years not knowing because "survivors" don't get PET scans automatically. Yearly Mammograms didn't help because the cancer was not in my breasts any more it had moved on. Survivors get to live waving their pink ribbons thinking they're free of cancer... until there is a pain/issue. I don't feel like a survivor. I'm in the midst of a battle - I need a cure before I die. After two years, all mets are clear (including liver) except for two small spots on pelvis. Two years and wondering how many more. I'm 54.

Claudia Schmidt

Monday 22nd of October 2018

Great post, Nancy. 8 years out, I am ever more aware of Metastatic breast cancer and how we need to spend our money, time and efforts on research for a cure/vaccine instead of awareness. Thank you for your continued advocacy for all of us.

Nancy

Tuesday 23rd of October 2018

Claudia, Thank you and thank you for you continued work as well.

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