Skip to main content
Metastatic Breast Cancer, Let's Talk About It #breastcancer #MBC #metastaticbreastcancer #advocacy

Metastatic Breast Cancer – Let’s Talk About It

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.

To get more articles like this one delivered weekly to your inbox, Click Here! #KeepingItReal #SupportYouCanUse

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

11 thoughts to “Metastatic Breast Cancer – Let’s Talk About It”

  1. Toward the end of early stage treatment, my oncologist briefly mentioned that I had a big chance of it reoccuring. I kinda knew this because from the start she called my cancer ‘ugly’ and a hospital group made her get a second opinion on the treatment plan she’d created which even she termed ‘aggressive’. I think I’m more angry about my own attitude. for six years after treatment, I felt GREAT. I looked good, too. And while it was always in the back of my head that it could return, I pushed that thought away and hoped that my optimistic husband’s positive thoughts would win. Not to be. It’ here and I live with it every day. I was so angry at first, didn’t know what to think and I hated everyone. But therapy (and please, MBCers get help if you need it!) and good doctor changes have made a difference. I don’t know how long I have, but I do try to live each day well! Thanks for your words, Nancy.

    1. Linda, I’m wondering why you’re more angry about your attitude before your mbc diagnosis. Are you saying you were too optimistic or in denial? I think you’re being too hard on yourself. I agree about seeking therapy. Seems to me, there should be therapy offered when anyone is diagnosed with mbc. Should be part of the tx plan. I’m glad you’ve been benefiting from that and from good doctor changes. Thank you for sharing.

  2. My oncologist was and continues to be very good about discussing the possibility of and the treatments available to be for MBC. I really feel prepared now whereas the 1st time I was diagnosed I felt very blindsided and took it very badly. I know much more research needs to be done though and more people need to be informed. It still amazes me how many are not.

    1. Also I wanted to mention that this blog was very helpful, especially the charts. I’ll save this one to refer to. And yes, it’s snowing here also!

      1. Donna, I’m glad you found the charts helpful. I did too. If you visit Jo’s site, you can download them. Or just come back to this post if and when you wish. Enjoy the snow. Not a fan of October snow. Oh well.

    2. Donna, It’s good your oncologist is good at discussing this stuff. Mine doesn’t really bring it up unless I do. He did in the beginning when we looked at charts and graphs regarding benefit of chemo and endocrine therapy. Never was told what to watch for, but after my mom’s experience, I already knew. Of course, I’m always asked about any new pains and such. No one has ever come right out and said that’s to check for recurrence symptoms, although we all know that’s what the questions are for. I’m amazed too at how many people are uninformed about mbc. Big failure of BCAM.

  3. I was one of those rare “de novo” cases and was diagnosed with Stage 4 MBC out of the gate and out of left field at age 51 with no prior family history of breast cancer whatsoever. Went to see my primary doc about some neck pain and next thing you know I’m having radiation.
    I guess what I’d like folks to know is that just because I don’t outwardly look sick and I still have my hair does not mean I am no suffering both physically and mentally. I’m 3 years into this shitstorm and it doesn’t get any easier. Pink is not all it’s cracked up to be for many of us….there are no bells to be rung, no “survivor” t-shirts to be worn. I just am….and as you often say so perfectly Nancy, this disease did not make me a better person or somehow cause me to realize how good I had it. #fuckcancer
    I am just trying to live as long as I can like everyone else so I can be there for my family and those who need me.

    1. Cheryl, What a shock it must’ve been to be diagnosed with mbc right out of the gate. I’m sorry. Your point is such a good one. Looks can sure be deceiving. Of course, we all know this, and yet… And yeah, Pinktober definitely is not all it’s cracked up to be. And the bell ringing. Ugh. I wrote about that awhile back. I appreciate your comments. Hope you’re doing alright these days.

  4. This last post of yours, Nancy, has scared the crap out of me. I desperately need a definition of early stage breast cancer. I haven’t read your book and I don’t know what you classified your mother’s early cancer as. I know that there’s always a chance of my cancer coming back, but since I was stage I with negative lymph nodes and a low Oncotype DX test, therefore, I assumed my chances are very low of getting MBC. My thinking is the younger you are and if it has spread to her lymph nodes you’re screwed. After reading your last post now I don’t know what to think.
    Sue

  5. Nancy finally can catch up on my reading. I know you don’t have stage 4 metastatic cancer. You make it very clear what your diagnosis is. I was diagnosed de novo in March of ‘15. I have dense breasts and am hormone receptor positive. The gene mutation that probably caused mine has yet to be discovered and it does run in my family, although I’m not BRCA I am ashkenazi Jewish. It’s unjustly assumed that I have BRCA as such. There’s a few things that happen when people I aren’t completely clear about their diagnosis but they play in the metastatic sandbox pretty regularly. I’ve assumed that they’ve had an mbc dx, but then I’ve been schooled to the contrary. I make certain to remind my readers as a tool of my diagnosis so the right lens can be focused on what they read. It’s different. Death is not abstract. NED doesn’t last forever. 100% of us will probably die from our disease unless we get hit by a bus first (sarcasm – I hate when people say “everyone dies, Ilene, everyone dies of something” or steal my own quote that life is terminal. Everything born dies. Even a cancer cell. But the things that annoy me the most are calling us chronic not terminal (I wish I were chronic) and reminding me of the ontology of life in that all secondary cancers aren’t metastatic but (sans de novo) 90-96% of metastatic breast cancer is secondary. Do you think there is confusion there as well or is it just me? Lastly, even in the metastatic community there’s definitely a “this is worse than that hence this comes before that” this being younger women and non-white women. I have to rip the band-aid off of that one. As a patient advocate in the time of Covid I’m simply not very interesting – I’m not a medical practitioner of any kind; I’m white middle class; and I’m 55 or late middle aged. I have much wisdom to offer to anyone in the metastatic community going on six years now. But I’m fairly ignored… in the time of Covid I wasn’t able to meet my counterparts in person at the Philadelphia conference, the upcoming San Antonio conference or at the die in. I was well enough to have gone this year. But because of the isolation there’s another one forming between each of us who didn’t have the opportunity to meet. And I know I’m not the only one who feels alone and marginalized. And I know what I’m saying is controversial and I’ll be verbally slapped. But there’s no room for a schism in a small group who are all on a death march some longer than others and we need to advocate for everyone. I agree a large percentage of women of color receive sub par care. But I did not receive good care when I was first diagnosed but I fought against it – it’s my life I’m advocating for so I may be here to support anyone regardless of demography. Death is a democratizer. It doesn’t discriminate either. We have to pull together to have a stronger voice for all the issues. And I appreciate your support as always.

    Much
    Much
    Much love.
    Ilene

Leave a Reply

Your email address will not be published. Required fields are marked *

%d bloggers like this: