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Metastatic Breast Cancer – The Unspoken Words

I’m not sure why the topic of metastatic breast cancer is still too often neglected. Obviously, it’s a tough topic, but that doesn’t mean we shouldn’t talk candidly about it. We can’t just sweep it away or dress it up nicely in pink.

For clarification purposes, recurrence and metastatic breast cancer are not necessarily the same thing. A recurrence can be local, regional or distant.

A local recurrence means the cancer has come back in the breast, or in the scar (in case of mastectomy).

A regional recurrence indicates the new cancer is in the lymph nodes of the armpit or in the collarbone area.

Metastatic breast cancer means the cancer has spread to other organs of the body typically the bones, lungs, brain or liver. This is also referred to as distant recurrence.

A diagnosis of any of these is, of course, devastating though treatment and outcomes are not the same for all.

When you hear the words, You have cancer, you might think you’ve heard the worst three words you could possibly hear in regard to your own health. In reality, what’s far worse is hearing the words, your cancer has come back, or your cancer has metastasized. Or you’re stage 4 out of the gate.

20-30% of those diagnosed with breast cancer, will have a recurrence at some point. Roughly 6% are metastatic at initial diagnosis (de novo). Each year around 40,000 women and men die from metastatic breast cancer. The fact remains that two years, five years, ten years, even twenty years passing does not guarantee that a woman (or man) is in the clear for good.

Despite these statistics, words like recurrence, metastatic breast cancer, stage IV and incurable often remain unspoken. They are heavy words. Even bloggers like me sometimes hesitate to write about them.

Why is this?

Perhaps one reason is fear.

Facing a recurrence or metastatic cancer of any kind, even as a possibility, is scary and hard; but this is also exactly why we do need to talk about it.

Perhaps subconsciously we feel if we just keep quiet, it won’t happen to us or our loved one. Of course, we all know this isn’t true, but the mind works in mysterious ways.

Another reason might be because we don’t want to offend those already living with metastatic breast cancer. There is a certain amount of survivor guilt involved when you know others who are living with mets and you are not. Again, this self-imposed guilt makes no sense, but that doesn’t mean we still don’t feel it.

One huge reason many of us hold back and don’t speak of recurrence or metastatic breast cancer  is to protect our loved ones. Facing cancer once is bad enough for everyone. No one wants to think of putting loved ones through it a second or third time. I sure don’t.

Another discussion barrier is that people often automatically equate metastatic breast cancer with a death sentence. While it’s true there is no cure, metastatic breast cancer is treatable. It doesn’t mean the person will be gone in X number of days, weeks, months or years.

We can’t just write off those with metastatic breast cancer. We can’t just look the other way. We can’t ignore reality. 

Talking about metastatic breast cancer forces us to grapple with the topic of death, and society doesn’t want to touch that one with a ten-foot pole.

One thing I do know is this:  just because recurrence and metastatic breast cancer aren’t discussed as much as they should be, it doesn’t mean those of us with an early stage diagnosis aren’t thinking about it.

Anyone who has had a cancer diagnosis thinks about recurrence, even if they never speak of it. Keeping quiet doesn’t equal not thinking about it.

This is not to say we dwell on it, are pessimistic, or live life in constant fear.

One main reason so many in Breast Cancer Land are dissatisfied with all the October madness and the prevalent pink ribbon culture with its almost cavalier attitude toward breast cancer, is because too often the mets community isn’t adequately included, or even included at all.

Metastatic breast cancer doesn’t fit in very well with all the pretty-in-pink shenanigans.

Metastatic breast cancer doesn’t fit in very well with “the rah-rah, everything’s going to be okay” messaging that is generally conveyed all year long via all the pink hoopla either.

Metastatic breast cancer is not the reality most want to talk about.

Still, metastatic breast cancer is reality for many families. There are about 155,000 men and women living with metastatic breast cancer.

We owe it to them and to all who’ve died from this wretched disease to talk about it, even if it’s hard.

Not talking about it is just plain wrong.

Why do you think the topic of metastatic breast cancer is often off limits?

Are you living with metastatic breast cancer and if so, what would you like people to know about it?

If you’ve been diagnosed with early stage breast cancer, do you think about recurrence much and if so, do you talk about it?

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#MetastaticBreastCancer, The Unspoken Words

Metastatic Breast Cancer, the Unspoken Words

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Linda Boberg

Monday 12th of August 2019

Well now that I am Stage IV (which sucks), I want people to not look at me with pity in their eyes. I don't know what's in store for me. I don't feel bad right now, but I am taking super strong meds - faslodez, verzenio, xgevia - all in an effort to contain the cancer that's in my bones. The oncologist and staff are upbeat. They tell me about patients who are living longer because of these drugs, or that new meds come out all the time. I cling to that. As for what to do . . . I don't know. I do know that last year I went to a walk and someone was there who was Stage IV and the group applauded her. People are aware of it; we just don't know what to do.

Nancy

Tuesday 13th of August 2019

Linda, I think a lot of people are still not aware of it. But it's good to hear that the group you were with was. It is hard to know what to do or what to say. All the more reason why those who are able should talk about it. That's how I feel anyway. And yeah, stage 4 sucks.

Julia Barnickle

Monday 12th of August 2019

‪I have to admit I don’t exactly talk about metastatic breast cancer - and I’ve been living with it for over 5 years. The reason I keep quiet is because I believe people who have had primary breast cancer don’t want to know about it out of fear that it’s an immediate death sentence - but it usually isn’t.‬ What’s more, it’s still possible to lead a relatively good life - you just have to “indulge” in a lot of self-care, which is never a bad thing.

Nancy

Tuesday 13th of August 2019

Julia, You might be right. Seems like all the more reason to talk about it. Not wanting to know seems a bit like putting your head in the sand. Thank you for sharing.

Riva

Saturday 13th of February 2016

I've read this blog and thread with a lot of interest. I had my diagnosis of bone mets 2 years after my initial Stage III diagnosis. This news was devastating, to be sure. But I also never believed I was cured, or had "beaten" anything. It was clear to me that a Stage III diagnosis (with a lot of lymph node involvement) put me at huge risk. I considered myself waiting for the penny to drop: it was just a question of when, not if. And now that I have mets, it's still a question of when, not if it gets me. So I was hardly surprised and in some respects, having metastatic cancer hasn't changed things enormously, since the basic condition of an advanced (even Stage III) diagnosis is living with profound uncertainty about how many years you might expect to survive. 2? 3? hope for 5? get to see a child graduate from High School or not? I am still in that same boat. And yes, it is a terribly lonely place, yes, most people don't understand. I have taken to correcting people who say "well, none of us knows how much time we have" by way of implying that the stage IV cancer patient shares an existential condition with everyone else out there. Sure, I say, that's true--but all of the risks that you (the person without cancer) have, like being hit by a bus, are also risks that I still have. Plus a great big fat statistical chance of dying quite soon.

Marcus

Saturday 4th of October 2014

My mum beat breast cancer which she was diagnosed with 10 years ago. Just last week was diagnosed with metastatic cancer. Is there any where I can find more information on this? Don't know where your from I'm in the uk. Many thanks

Nancy

Saturday 4th of October 2014

Marcus, I am sorry to hear about your mum's mets diagnosis. You could start with my mets page. Click on the mets link at the top of my blog home page. I have some resources listed there. There are good resources out there. Good luck with things. Keep me posted.

sunil srivastava

Thursday 21st of February 2013

Hi, my wife has been diagnosed with stage 4th breast cancer since Aug.2012. First chemo was of six cycle of 21 days gap. now on DEc. oral chemo has been started. im afraid.. she is weak with capicitabine..plz guide

Nancy

Thursday 21st of February 2013

I'm sorry to hear about your wife's stage IV diagnosis. It's certainly understandable that you are feeling afraid. Please visit my mets page, which is located on my home page, for a few resources/links to visit online. The Metastatic Breast Cancer Network has a free booklet with answers to 15 questions most frequently asked about stage IV. Please discuss your wife's fears as well as your own with someone, preferably a professional, but a good friend might work too. I wish I could "guide" further. I am not a medical professional, but I am here to offer some resources, posts, online links and my words of encouragement. I hope you find some of it helpful. Supporting your wife through this will mean an awful. Good luck with things. Keep me posted.