One day is not enough!

October 13th Is Metastatic Breast Cancer Awareness Day – Seriously, Just One Day?

Many troubling shortcomings regarding the “pinking” of October have been exposed, but perhaps the most glaring failure of all has been the consistent disregard, yes even shunning, of the metastatic breast cancer community. It’s ironic, frustrating and completely irresponsible (not to mention cruel) to not more fully embrace this segment of the breast cancer community in awareness, support and research efforts. Thankfully, this is slowly changing. 

Does living with metastatic breast cancer have to feel so lonely? Maybe, but then again; maybe not.

October 13th is the date chosen to be designated as National Metastatic Breast Cancer Awareness Day. Seriously, just one day?

Shouldn’t those with the most need be the most supported?

Women who die from breast cancer die from metastatic breast cancer.

This is a pretty simple truth that usually gets swept aside or even swept away completely not just in October, but all year long.

With nearly all the focus being on early detection, a woman might think she’s completely in the clear if she finds and treats her cancer early on, but this is not necessarily the case. Early detected cancers can and do sometimes metastasize too. This happened in my family. My mother’s cancer was diagnosed at an early stage. Her cancer metastasized roughly four years later. She died less than six months after that.

We still do not know which cancers will or will not metastasize. We still do not know how to prevent or halt any given metastasis. The best we can offer is slowing it down once it happens.

This is just not good enough.

Metastatic breast cancer is not an easy topic of discussion partly because of the many unknowns and partly because of the fear the topic evokes.

It’s easier to not bring it up during all the awareness hype. It’s not as pink. It’s not as pretty. It’s not as “presentable”.

But present it we must.

And we cannot be satisfied with one day in October. One day is not enough; not even close.

Because breast cancer awareness without mets awareness, isn’t awareness at all.

To learn and share the facts about metastatic breast cancer, click here.

Donate to organizations that support metastatic breast cancer outreach and research efforts. I have a few listed on my Mets page.

We will not forget…

Are you living with metastatic breast cancer or do you know someone who is (was)? If yes, what’s one thing you want others to know about it?

Why do you think the metastatic breast cancer community has been left out of the “awareness” for so long?

Do you feel this is changing?

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One day, seriously?
image via Metastatic Breast Cancer Network




32 thoughts to “October 13th Is Metastatic Breast Cancer Awareness Day – Seriously, Just One Day?”

  1. I would want people to know that we need solutions, because despite how far things have come (something I’m often told) people are dying. There isn’t an easy fix for breast cancer that has advanced this far.

    One other thing, even though the 13th is the day for metastatic breast cancer, I feel like the ladies online have done a great job of sharing the stage 4 story this whole month through. For that I am grateful. ~Catherine

    1. Catherine, No kidding about the no easy fix. That’s part of the problem with the picture that’s too often portrayed. Solutions – that’s what we need. Thank you for commenting.

  2. I have been living with stage IV breast cancer for just over 4 years. What do I want others to know about it? When I heard the news that I had a brain met, I thought there was no hope whatsoever…I want others to know that while we need to be realistic about our diagnosis, until the doctors tell you they’ve run out of treatment options, there is hope. Hope for more, time, hope for more quality life experiences.

    I do wish that “Pinktober” was more balanced in message. While I am thankful for the light it shines on breast cancer, I sometimes feel like it is an “early detection and awareness saves lives” victory lap of sorts. More emphasis on treatment and research surrounding advanced stage disease would be nice! We need to tell the WHOLE story, not just the glossy sound bites. We should celebrate ALL survivors, not just the survivors that are easy to talk about during halftime of an NFL football game….I think the metastatic breast cancer community has been left out of “awareness” discussion because the conversation is not easy, simple or a part of the chosen marketing message. Too bad, because surely there is a way to include it? Maybe early messaging was Phase I and the best we could do at the time, but now we can move on to Phase II?

    1. Cathy, We sure do need a more balanced message don’t we? I completely agree that the whole story needs to be told, including the not quite so pink and pretty parts. I hate how those with mbc have so often been left out. I love your idea about phase II. Sounds perfect. Thanks so much for sharing your thoughts.

    1. Ginny, I agree – we need to keep beating the drum every day. I just wish BCAM had a bit more focus on mbc, though I do see this changing finally. The whole month should be dedicated to raising awareness about all aspects and stages of this wretched disease. Thanks for reading and commenting.

  3. My breast cancer was metastatic at diagnosis, in May of 2011. I have been continually treated since then, doing pretty well so far at holding it at bay, but running through treatments a lot faster than I’d like, still looking for a way to beat the odds, but not really counting on it anymore.

    What I want people to know is that we “Stage IV Sisters” are not dead yet. We have hopes, dreams, goals, desires. We have the same human needs we have always had. The difference between now, when we have a pretty good idea what we’ll die from, and then, when we still may have harbored some secret belief in our own immortality, is we know this is not a dress rehearsal. This one, precious moment is all there is, in every moment of now.

    If you shun us or avoid us or fail to ask what it’s like to have a diagnosis like this, then you’re missing out on a huge opportunity. Everyone alive is going to die, and very few of us will get the optimal death. We’d probably all like to die peacefully in our sleep at the age of 98 after having a lovely day with the most precious people in our lives, with no pain, suffering, fear, disability or indignities. But few human beings get that.

    What I want others to know is I’m not so different from you. We’re all going to die. As the saying goes, the important question is not whether there’s life after death, but whether there’s life before that time.

    Everyone needs love. Everyone needs to be seen and acknowledged. Be sure, every day, that you give someone that gift. And you get extra bonus points and gold stars if you give it to one of the discarded people, someone who’s been forgotten or marginalized.

    1. Amy, I’m wondering how it must have been for you to be diagnosed from the start at stage IV. There’s so much emphasis on early detection, and I’ve heard some who are stage IV at diagnosis say they sometimes have been made to feel at fault; which is horrible. I appreciate your wonderfully articulate and heartfelt comment. Your points are so important. Thank you so much for reading and taking time to add your insights, Amy.

  4. I really enjoy your blog. My mother lived with breast cancer for 34 years. I was a young teen when she first learned she had breast cancer. She went from stage 1 to Stage 4 over those 34 years. I am now a stage one girl myself and I am painfully aware of how we all do not survive and I agree more focus needs to be on the research aspect of preventing the spread of the cancer. My mother survived 7 years at stage IV but I felt the medical community at the time just felt she was a lost cause. I know it was a very lonely place for her as NO ONE wanted to talk about it. She was an amazing women with incredible strength. I just wish there had been more support out there for her. It is a good thing that this is being talked about more. I believe a lot of people simply feel if you are stage I you have nothing to worry about but the reality of it is we are all looking over our shoulders. A lot can be learned from our Stage IV sisters. The community and the medical world needs to take notice.

    1. Linda, Thank you very much for your comment. It states things perfectly. I’m very sorry for your loss and that you were diagnosed as well. And thanks for your kind words about my blog. Much appreciated.

  5. Nancy, great post. Thank you for your never ending support of those of us living with metastatic breast cancer. Thank you for taking the initiative to educate people and spread the word! I am proud to call you my friend!

  6. You really do say it like it is.
    People do not understand MBC. For the most part, I think they don’t really want to. They want to believe that all that needs to be done to save both breasts and lives is to be aware and positive. They do not want to admit that after 30 years of pink fundraising, we still have almost as many women dying each year.
    Pinktober is fun! Provided you haven’t had disfiguring treatments so that you feel hurt by the sexy stuff. Or that neuropathy from chemo does not prevent you from the racing. Or fatigue. Or hormonal side effects. Or especially, that you have mets. That you can’t ever be cured seems to really spoil their fun!
    Some even have to make it your fault to preserve the illusion. You were not “aware” enough. You are not thinking “positive” enough. You need more “faith.” Or if they are generous, they are sending you their warm thoughts. (Prayers are totally different – those I welcome.)

    1. Elizabeth, I hope people do want to know and understand about mbc, at least most people. It’s too hard for me to think otherwise. The conversation definitely needs to change and I see signs that it is, though slowly. Thanks so much for always sharing your true feelings. They are so valid and it’s so important that others hear your messages.

  7. I talked to a nurse case manager through my insurance today who is newly assigned to me. In the the course of our conversation it became clear that she thought I would do a course of chemo and be done. I was rather dumbfounded that I, the patient, had to school the nurse in the fact that, with metastatic cancer, I would be in chemo for the rest of my life. When one fails I start the next one, until they all have failed, or I just can’t stand it anymore, or I die. Whichever comes first.

    1. Shelli, It’s amazing how uninformed many are. I do hold the rah-rah pink ribbon culture partly responsible for this. I bet you were more than dumbfounded! It is sad when those working directly in the field still do not understand isn’t it? Thank you for taking time to read and also comment, Shelli.

  8. Dear Nancy, I may have already tried to tell you but I just wanted to say again, perhaps more clearly, just how comforted I have been the last 14 plus months, and continue to be, by your never ending support and clarity regarding metastatic breast cancer truths. You are one of the kindest, most sincere women I have ever known. Thank you.

    What I’d like others to know about living with metastatic breast cancer? I’ve said pretty much everything I feel on my own blog posts, but to sum it up I guess it would be the thing about the fear, the sense that we seem shunned due to the fear elicited from the pink crowd, those just starting out with treatments, those hoping to survive, those hoping to profit… I’d like others to know that – we DON’T all survive, we are ALL afraid, and those of us living with metastatic breast cancer should ALWAYS be counted!

    much love…

    1. Carolyn, You’re so kind. Thank you. Thanks for sharing what you want others to know via your own fabulous blog and also here in your comment. And yes, those living with mbc should always be counted and never shunned. xoxo

  9. Just wanted to comment on Carolyn’s post. You say it like it is! I appreciate that a lot. I am a stage I girl but I grew up with breast cancer, mom, Aunt, Grandmother, now my sister inlaw and myself. I definitely saw the changes in attitude in the people around my family change as my mothers cancer spread and she became stage IV. There is the fear(people do not like to dance with fear) and many simply do not want to think about deaths door slowly opening wider. However there is always hope and I do believe progress (slowly) is being made in the medical world at preventing/slowing the spread. My mother was told she had 6 months and she lived a good life for an additional 7 years.
    You are so right we are all afraid and people with metastatic breast cancer will ALWAYS be counted in my book! I have hope now that metastatic breast cancer is being talked about more others won’t feel compelled to run the other way. The pink crowd just needs to stop sugar coating it so much. A lot more needs to be done besides better screening.

  10. Thank you for writing this great post. When I originally went to comment I had so much to say that you inspired me to write about this too. It is so important that we keep getting the message out about MBC. I wish that awareness of mets went with breast cancer awareness so people understood those living with mets should always be included in breast cancer awareness. And yes we need more than one day. I hope there’s a change in awareness and focus on keeping our fearless friends with mets living longer lives with better treatments and less toxicities.

  11. Nancy,
    I just posted your blog onto my Cancer Be Glammed Facebook page because I wanted to share your words of wisdom. I totally agree with you that metastatic cancer is still hidden in the closet. I think you are right that fear is a large piece of it. As a breast cancer veteran, I know I am extremely afraid of it. But I also know that fear is one of the worst reasons to remain uneducated and uninformed. Thank you for being such a “fearless friend.”

    1. Lisa, The veil is starting to be lifted because many are just refusing to keep quiet about it any longer. It’s staggering to me how many people still do not realize how many women and men die every year from breast cancer and that the number hasn’t changed all that much of late. This is a serious problem with the messaging of pink ribbon culture and I do hold the big players at least partly responsible for this negligence in not educating about the full spectrum of this disease. Thanks for sharing my post and thanks for commenting here. Thanks for ordering my ebook too!

  12. I am a contrarian with an anarchist thinking style. However I was diagnosed on the 13 of October because of those TV ads I kept seeing. I am for aggressive nutrition and exercise from before the peak of breast cancer ie 49. That’s when hormone imbalance peaks.It’S NEVER TOO EARLY TO BE HEALTH CONSCIOUS. NO DAIRY, ESP PASTEURISED DAIRY, ALCOHOL AND FIBRE-POOR WHEAT PRODUCTS. NO SUGAR.oTHERWISE i AM ALSO ANTI RIBBON IF IT’S FOR PROFIT.i AM FURIOUS, CURIOUS CANCER SURVIVOR SURVIVING NATURALLY. fIND ME ON WORPRESS.

    1. Ersie, Ironic that you were diagnosed on October 13th. Sorry about that. I agree it’s never too early to be health conscious, but it’s important to remember that sometimes no matter what a person does or doesn’t do, cancer still comes calling. Keep on being furious and curious! Thanks for sharing your thoughts.

  13. I’m not even sure the conversation of metastasizing was thought of or presented to our family as something that might happen until it actually happened. Then we got the statistics and progression of what might happen. So the first occurrence in another part of her body was out of the blue to us. I’m the researcher in the family, I should’ve known but there wasn’t a lot of info about it at the time.
    Families need to ask the hard questions.
    “Doctor in you experience and study what is the most common re-occurrence? What are treatment options when it happens? What do we need to know and do now before that might happen?” Be specific, “She had a spot on he breast bone but the vertebra across from her breast bone has been painful.” If treatment is presented ask what are the alternatives. There usually are less traveled treatments and you may want to explore them to make an educated decision. Never take the first option at face value, you might return to it but you need to know if there are other choices.
    All the influx of pink ribbons have kinda made me sad. I finally wrote about Mama. Her cancer went from breast to bone to liver to more bone to brain. It was a very horrible journey.

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