Metastatic Breast Cancer – Let’s Talk About It

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Metastatic breast cancer (MBC) is a topic that some in Breast Cancer Land avoid. And don’t get me started on the lack of attention (and research $$$) MBC has received over the years during all the BCAM hoopla.

Why this avoidance persists, I will never understand.

Some (maybe many?) oncologists don’t even mention MBC risk to their early stage patients, which really makes no sense when you think about it. I assume this is because doctors don’t want to scare or worry patients, but not discussing such things can ultimately have the opposite effect.

Going further, an oncologist not discussing potential, ongoing risk for metastasis borders on unethical. And, of course, discussion needs to include signs/symptoms to watch for.

My mother’s MBC experience changed me forever. That whole experience is one reason for my continuing advocacy as well as for this particular post. She was diagnosed at an early stage. Her cancer still metastasized. She died months later.

If you want to read more about all that, I wrote extensively about it in my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A memoir about cancer as I know it.

Oddly perhaps, I’ve never written a blog post specifically covering the basics of what MBC is because I’ve always figured people can just Google it, right?

Besides, I’m probably preaching to the choir. You, Dear Readers, likely know quite a lot about it.

But I’m guessing many of you early stagers didn’t learn what you know from your oncologists, am I right?

One of my favorite quotes on this hesitancy to discuss comes from my online friend, Martha, who brilliantly stated the following in one of her excellent pieces for Cure:

Metastatic breast cancer is scary, but it is not so scary that it cannot be mentioned.

Amen.

A lot of things are scary to talk about. But that doesn’t mean we shouldn’t talk about them. Saying the words, metastatic breast cancer, won’t make metastasis happen or hasten the death of someone diagnosed with MBC. We all know this to be true and yet, the hesitancy to discuss continues.

So, let’s talk about it.

You might want to read, Metastatic Breast Cancer, Let’s Start Saying the Words!

What exactly is metastatic breast cancer?

Perhaps some of the confusion (in the general public) comes about because MBC is called different things. Advanced cancer, Stage 4, recurrent disease, secondary breast cancer – these are all used interchangeably.

No matter what we call it, it’s imperative to know what the symptoms of MBC are. Jo Taylor, founder of abcdiagnosis and METUPUK, created the helpful infographs below that illustrate red flags to look out for.

Visit Jo’s site to learn more and to download the infographs if you’re interested. She encourages you to share them with doctors and others.

Below are 12 basic facts about metastatic breast cancer:

(As always, please remember this blog is never a replacement for medical advice.)

1. Metastatic breast cancer (MBC) is cancer that has metastasized or spread to other organs of the body.

This spread happens when cells find their way outside the place of origin and migrate to other organs. This cell migration happens via the lymph system or the bloodstream.

The bones, lungs, brain and liver are the most common organs where metastasis happens. However, any organ can become invaded. I had a dear friend whose cancer metastasized to her skin. (Yes, your skin is considered an organ.)

2. Roughly 6-10% of metastatic breast cancers are diagnosed de novo, which means from the beginning.

Imagine the shock of such a diagnosis right out of the gate. Yet, it is reality for some; so yes, imagine it.

3. Metastatic breast cancer can be treated, but it cannot presently be cured.

4. Treatment lasts for the rest of the person’s life.

Goals of treatment are twofold: control the cancer for as long as possible while not obliterating quality of life.

5. Treatment options for MBC are not all the same.

Treatments are becoming more and more individualized based on type of cancer, location of metastasis, gene mutation status, genomic testing, molecular testing, age and other variables. You can read about some of the treatments here.

6. The primary treatment goal for a person with MBC is to find and maintain disease stability.

When early stagers are told they are NED, it means no evidence of disease. When a metster hears NED, it means no progression at that time. But the clock is ticking. Eventually, each treatment will lose effectiveness. Eventually, treatment options run out.

I’m reminded (again) of the wise words from the late Barbara Brenner:

Patients do not fail treatments. Treatments fail patients.

7. It’s important to clarify that breast cancer that metastasizes to the bones is still called and treated as breast cancer. It is not bone cancer.

8. A diagnosis of MBC does NOT mean the person did something wrong.

If you’ve been diagnosed with MBC (or any stage), it is NOT your fault. (Yes, sometimes this is implied by the uninformed.)

9. Roughly, 20-30% of early stagers will progress to stage 4 at some point down the road.

I’m not sure where this percentage originated, but it seems to be the figure most often used. Regardless of the exact percentage, a significant number of early stage breast cancer patients will progress to stage 4.

10. The 5-year survival rate for women with metastatic breast cancer is 27%.

The 5-year survival rate for men is even poorer at 22%. This is likely due to the fact that men are diagnosed later. Man or woman, these are not acceptable survival odds.

Source: Cancer.Net

11. It’s estimated that 168,000 people in the US are living with MBC.

The above number is likely not accurate as numbers aren’t tracked as they should be by SEER (Surveillance, Epidemiology and End Results Program – National Cancer Institute). Why this is I do not know. Advocates are working to change this. As I understand it (correct me if I’m wrong), people initially diagnosed as early stage aren’t counted when diagnosed later as stage 4. If that doesn’t leave you scratching your head wondering WTF, I don’t know what will.)

Source: MBCalliance

#MetastaticBreastCancer, Let's Talk About It #pinktober #MBC #pinkisnotacure #researchnotribbons

12. Estimated deaths from MBC are expected to exceed 42,000 in 2020.

During BCAM and all year long, we keep hearing about all the improvements in Breast Cancer Land (and there have been many), but the bottom line is that the number of deaths has not improved in decades.

What kind of progress is that?

For the most part, Breast Cancer Awareness Month has been a big fat failure as far as raising awareness about MBC and including those with MBC in events, campaigns and such for the past three decades.

BCAM has primarily focused on the survivor-in-pink narrative – an overly pinktified, stale narrative that too often isolates, erases even, those living with MBC. (And it erases men, too, I’d add.)

The late Beth Caldwell, co-founder of METUP expressed that sense of isolation so well:

We might not die right away–we might suffer through treatments for a while, but eventually, nearly all of us will die of our disease, and 100% of us will die with our disease, because it is incurable. So, how can I be a survivor of cancer? How can you survive something that will eventually kill you?

Sure, things are getting better thanks to dedicated advocates (like Beth), social media and the voices of those living with MBC getting louder and demanding action.

Clearly, there is still much to be done.

All the pink ribbons in the world mean nothing without awareness, research and meaningful action to support those with MBC too.

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Thank you for sharing this post!

When did you first learn about metastatic breast cancer?

If applicable, did/do your oncologists discuss MBC risk?

If you are living with MBC, what is something you want others to know about it?

Metastatic Breast Cancer, Let's Talk About It #breastcancer #MBC #advocacy #metastaticbreastcancer #stage4 #advancedcancer

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