Marking time again & why I do it #metastaticbreastcancer #cancer #breastcancer #advocacy #grief #loss #memories #family

Marking time again & why I keep doing it

I’m marking time. Again.

March 6th marks 13 years since my mother died from metastatic breast cancer. 13 years is a decent chunk of time gone by.

So, why do I keep marking time here on the blog?

It’s not really about me or my family at all. Well, it is, but it isn’t.

Mostly, it’s about advocacy.

Blogging is the core of my advocacy. It’s the vehicle I choose. Talking about metastatic breast cancer and sharing voices of those living with it is the heart of that advocacy.

You might want to read, Metastatic Breast Cancer, Let’s Talk About It.

Sure, I will be marking time and remembering every single year on March 6 for the rest of my life. I remember every single day. So, of course, I mark time here on the blog to remember my mother.

How could I not?

I also mark time here because it’s a chance to talk about the numbers. No, to talk about the lives stolen by MBC.

After all, it’s not about numbers, it’s about lives.

The number of deaths each year from metastatic breast cancer is rising. When I started blogging, I recall the number hovering around 108 deaths per day.

The number of deaths in 2020 was projected to be 42,690 (42,170 women and 520 men). Doing the math, that comes out to 117 a day. The projected numbers for expected deaths from MBC in 2021 are even worse at 44,130 (43,600 women and 530 men). That’s about 120 a day.

Source: Cancer.Net

The pandemic might contribute to making these numbers turn out to be even higher. Time will tell.

Clearly, those numbers are not going in the right direction.

Recent Radiology Society of North America (RSNA) study results that looked at the numbers, revealed that the breast cancer mortality rates have stopped declining in U.S. women younger than 40 Years.

A key takeaway from the same study explains further:

Underlying breast cancer incidence rates have increased significantly in women younger than 40 years, and distant-stage breast cancer rates have increased even faster—by more than 4% per year since 2000 in women aged 20–39 years.

So is it younger women driving these numbers up?

Rising incidence rates coupled with rising distant-stage rates in younger women indicates this is likely the reason, or one of them anyway.

The study also revealed the following:

Women aged 70–79 years experienced a slower decline in mortality rates from 2009 to 2017 compared with the prior 15 years.

More younger and more older women being diagnosed and also dying from late-stage disease is driving the numbers up. Or so it appears from this particular study. Interestingly, it’s not currently recommended that these two subsets of women, the ones without known high-risk factors, be screened.

Granted, this study came from radiology — most radiologists are likely mammogram proponents. But the numbers presented in the study speak for themselves.

Read the RSNA study and its conclusions here.

Regardless, we don’t need a study to tell us that too many women and men continue to die from metastatic breast cancer every single day. Too many. Just too many.

Since my mother’s death, roughly another 520,000 women and men have died from metastatic breast cancer in the US alone. Another 520,000 families are far too familiar with this particular heartache. And that’s a low-end number.

Breast cancer research needs to be more focused on studying everything about metastatic disease.

We need to figure out why some cancers metastasize, how it happens, how to slow it down when it happens and ultimately, how to prevent it from happening at all.

Researching metastasis will benefit early stagers too since 20-30% of early stagers progress to late stage.

Early diagnosis is not a guarantee that all will be fine.

It just makes sense to put more dollars, research and focus into metastatic breast cancer. Doing so benefits all stages.

So yes, I mark time once again here on the blog.

I’m marking time to remember my mother, yes, but I also mark time…

  • To name in my heart all those I’ve had the privilege of knowing over the past 10 years of blogging who sadly, have died from MBC.
  • To acknowledge the countless others unknown to me who deal with this wretched disease and who very much matter to their dear ones.
  • To refocus efforts that push for meaningful research and change.
  • To commit to sharing the words of those who are no longer here and also to spotlight those who today are living with MBC. Read the latest #MetsMonday Featured post here.
  • To keep pushing for equity and fairness so outcomes don’t rely on color of skin, economic status, age or access to care.
  • To remind myself why I started blogging and why I’m still at it.
  • To invite others, to invite you, to join me in this important advocacy work.

So once again, I mark time to remember my mother, yes. I also do it to refocus my advocacy on efforts to save and improve lives of those living with MBC today. And to honor all those no longer here, including my mother.

At 13 years, I mark time. Again.

I remember.

And #WeWillNotForget.

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Thank you for sharing this post!

Who do you mark time for?

How do you advocate?

What do you see as the most important goal for MBC research?

Marking time again & why I do it #metastaticbreastcancer #cancer #breastcancer #advocacy #grief #loss #memories #family

10% of profits from my books is donated to MBC research.

8 thoughts to “Marking time again & why I keep doing it”

  1. I mark time – like I remember the dates we bought and sold houses. I remember death dates of relatives. Sometimes I wonder if I’m forgetting to enjoy the time I have because I’m too focused on dates and time! But it isn’t going to change.

    1. Linda, I’m pretty sure you can mark time and enjoy the present too. We’re all such a conglomeration of our pasts, so how could we not remember stuff? Of course, there’s some stuff we’d like not to remember too. Here’s to keeping our memories in tact so we can remember the stuff we want to remember anyway! Thank you for commenting.

  2. Feb 13 was 41 yrs since my mother died of MBC. 41 Yrs!!!! I can’t believe it. I was a mere 23 yrs old. I was diagnosed 4 1/2 yrs ago. It was not genetic. I wished desperately that I had asked her more questions, but I was so young, I didn’t even know what to ask. What I’m hoping for now with MBC research is that more knowledge will come forth about recurrence and what causes it in some and not in others, and why some have a recurrence early and some many yrs later. I think this is something that concerns us all and causes us a great deal of anxiety.

    1. Donne, Every time I read that about your mother, it is just so darn sad. So much she missed out on – so much you missed out on. It’s understandable that you didn’t ask her a lot of questions. Like you said, you were so young and didn’t even know what to ask. I’m really sorry you’ve had that gaping hole in your life for 41 years. I’d like more research about recurrence too. It’s a concern for us all, for sure. Thank your for sharing.

  3. I mark my diagnosis day and my surgery day. Who can ever forget those? I also mark time every day. Cancer is with me always even though I am NED. Wake up with it, live the day with it and go to sleep with it. I mark the time every day…another day further in my life and also another day further from the life that was. Cancer has definitely put a mark in the timeline of my life.

    1. Diane, Yep. Cancer puts a pretty darn sharp marker on a person’s timeline of life all right. Sometimes, I think we oughta give ourselves more credit for coping as well as we do. Thank you for sharing. Here’s to staying NED.

  4. Your words “meaningful research and change” are what stood out to me in your blog for today.
    My grandmother had BC at 70 and died of mets to the liver at 84, in the 1980s to 90s. My mother had BC at 59, which metastasized 22 years later to her ovaries, liver and stomach, in the 1990s to 2010s. A little over a year ago I was diagnosed on a Friday the 13th and had surgery two months later (long story), on Valentine’s Day. As Diane wrote, “Who can ever forget?”
    My point is, why is this still going on? We’ve been told for decades that curing breast cancer is just around the corner. I’ve only been reading your blog for a year. Maybe you have already blogged about this and can point me in the right direction, but what do you consider to be meaningful research and meaningful change?
    I also advocate, sometimes using your blog info, to my daughter, three younger sisters and their daughters. My daughter hears me, my sisters try not to. I wonder how often fear and discomfort interfere with hearing the advocacy message.

    1. Leslie, I’m sorry there’s been so much cancer havoc in your family. And you and Diane are right. Who can ever forget? You pose a good question. Wish I had the answer. I do think the over pinktifying and over simplifying of BC that went on for years, was harmful. There seems to be more focus on MBC these days, but until MBC gets more than 7% (or whatever dismal amount it is) of the research dollars pie, how can things really improve? That’s some of the meaningful change I intend to keep pushing for. Thank you for commenting.

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