Baby Steps

It’s easy to point out problems.  At least it is for me.  So, a few years back when I learned that the Susan G. Komen organization used very little of its large national budget on breast cancer research, I took many opportunities to point it out.

Those of us living with metastatic breast cancer (MBC) were enraged when we learned that a tiny fraction of Komen research dollars went toward research that might help people like us live longer.  We ranted.  We raved.  We were furious.

There are many social media posts and blogs about this topic.  This post takes a different slant.  Mine is about working towards a better outcome.  It’s about putting anger aside and making progress together.

When I attended the MBC Living Beyond Breast Cancer Symposium, a fabulous group of women took part in their Hear My Voice program, a seminar intended to help those with MBC make a difference.  One of the participants, Beth Caldwell, organized a Die-In with others at the conference and later co-founded MetUp, an MBC advocacy group.  Beth, in her blog “The Cult of the Perfect Motherhood” had much to say about Komen and how the organization had been failing in its mission to end breast cancer.  Many others living with MBC wrote similarly themed pieces, including me.

Image may contain: 4 people, including Sandra Spivey, people smiling

We felt like we were fighting for our lives while Komen was selling the breast cancer experience as pink ribbons and tu-tus.  It was all about the brave women (yes, the entire emphasis was on women, even though men get breast cancer too), who “fought valiantly for their lives” for a few months, then were able to put the disease behind them only to celebrate their victories each year at their local Race for the Cure.

When I agreed to speak at the local Race in 2016, I had to reconcile my distaste for the past actions of the organization with leveraging a platform to educate the community about metastatic breast cancer and support my MBC sisters and brothers.  At the Race wrap-up meeting, when everyone was congratulating themselves on a great event, I spoke up.  I pointed out that those living with MBC were upset with Komen and that’s why they stayed away from such events.  I blurted out that there was little for those living with and dying of metastatic breast cancer at the Race, and that it was unacceptable.  As the other meeting members eyes grew larger and larger, my friend and long-time Komen leader Sandy Finestone supported my views and said that the local affiliate and national Komen needed to do something about it.

She was right.

Since then, Komen has a new CEO, Paula Schneider, and a renewed dedication to slashing deaths from breast cancer by 50% by 2026.  The large ship, the USS Komen, is in the midst of changing its course.  It’s not a speedboat and isn’t able to make a sharp U-turn, but it is moving and changing.  For the better.

The Los Angeles Komen affiliate started making changes early on.  For the past six years, they have been hosting conferences to bring the local MBC community together and provide education, support and hope.  I wanted my local affiliate to do the same.

Two years ago, I attended an evening session sponsored by Komen Orange County held at the University of California Irvine.  UCI breast cancer researcher Devon Lawson, Ph.D., and others spoke.  I ended up participating in the conversation so much that Komen Executive Director Lisa Wolter suggested I speak at next year’s meeting.  And I did.

Since then, I’ve been tapped to act as Patient Advocate on UCI’s Breast Disease Oriented Team.  At the monthly meetings, I bring the patient perspective to topics the clinical and bench researchers discuss.  I don’t think they realized the level at which I participate in the discussion.  My association with the local Komen affiliate has made that possible.

In early 2018 OC Komen’s Director of Mission Programs, Ambrocia Lopez, asked me to help get a MBC conference off the ground in Orange County.  I enthusiastically agreed.  More about that in a future blog.

For this year’s race, I was interviewed by the Denise Dador, the health reporter at Los Angeles ABC 7 TV where I was able to talk about the importance of research and the plight of those living with metastatic breast cancer.  I was able to have my voice heard due to my work with the local Komen affiliate.

I believe that by me and others working with the Komen organization we will make important changes.  We will help set the stage for the metastatic breast cancer community and perhaps put breast cancer to bed for good.  So far, so good.

 

#$@*-Off For Breast Cancer Awareness

Flipping off breast cancer awareness month

Flipping off breast cancer awareness month

The much-hated (for me) Pinktober is now in full swing.  What is Pinktober?  It’s the 10th month when yogurt suppliers, kitchen appliance manufacturers, carmakers, Facebook pages and other media messages are tagged with “breast cancer awareness.”  They want you to buy stuff and do stuff for the cause.  They want to take your money, later donate some of it, and not tell you how they use the funds.  Some call this “Pink-Washing.”

This year, there is a “Go Braless for Breast Cancer Day.”  WTH?  What does going braless have to do with breast cancer and what are people really thinking?  Will men go all day with an open fly for prostate cancer awareness?  Will teens decide to cut themselves for leukemia awareness?  Maybe women with mastectomies and no reconstruction ought to go shirtless for the day.  Wouldn’t that raise some “awareness?”

http://www.facebook.com/events/101134023311845/

If someone wants to relate to those who have walked the path of breast cancer, there is a Go Bald Day on the 18th of this month.  You order and wear a skullcap to honor those who have experienced cancer.

http://beboldbebald.org/

Perhaps for breast cancer awareness, just put a big red X on a section of your breast that you might have lopped off should you end up with the disease (you can do this if you’re a man too), put a giant gauze pad over the top, secure the gauze with uncomfortable tape, and wear that under your shirt all day.  Then think about what it might feel like to have something growing inside you, but you don’t know what it is yet and you don’t know if or when it will kill you.  This could be “Be A Nervous Wreck for Breast Cancer” day.  It’s not about “Saving the Ta-Ta’s” – get real, people!

Do NFL players wear pink wristbands because we aren’t aware of breast cancer, and watching 350-pound linebackers in pink accessories cause people to want to look into issues surrounding the disease?  Thank goodness the NFL has an online shop to sell NFL branded breast cancer awareness items.  Too bad their message is “A Crucial Catch:  Annual Detection Saves Lives” when it’s not totally true.  Some of the videos on their pink site, although compelling, do not support the message and are about self-diagnosing the disease and not annual screening.  And the NFL isn’t even putting any cash into this campaign.  You, as a supporter, can bid on the pink items the players wear in the game.  Then your money can go to…um…something.  Lucky us!

http://www.nfl.com/pink

OK.  So I’m being a bit morose.  But seriously, what awareness are we raising this Pinktober?  What is the new news?  Other than writing some insipid remark on your Facebook page “in support of breast cancer awareness,” like answering the question “where do you like to place your purse when driving in the car?”  Now your cryptic posted answer needs to start with ‘I like it on the….’ And wow!  You’re supporting breast cancer awareness!

But I digress.  Again.

What are we raising awareness of?  That people get breast cancer?  That people are living with breast cancer?  We certainly don’t focus on the fact that people are dying of the disease.  Everything is pink and rosy in Pinktober.  Someone might have been sad for a few months, but now, look how happy they are!  They caught it “early.”  Aren’t they the sweetest things?  Don’t you just want to hug them?

Are we listening to those cute twenty-something women with doe-eyes on ads who think they need mammograms when there is no proof at all that mammograms do anything to save lives in women of that age group?  And for that matter, are we aware that mammograms have not been proven to reduce breast cancer death rates in populations under 55 or over 70?

Do we know that death rates have improved only marginally despite the millions and millions of dollars raised in the name of research?  And that we have made only a tiny bit of progress, finally discovering that breast cancers are not alike; that most of the time, breast cancer tumors are filled with different types of cancer profiles, not just one? And that most of the treatments used today are based on discoveries made over 30 years ago?

Do we know that we’re not looking for “a cure” for breast cancer but for several “cures”, because all breast cancers are not alike?  That a drug that kills cancer in one person makes absolutely no impact at all in another?  And that we might kill the bulk of the tumor through surgery, radiation or chemotherapy (the “Slash/Burn/Poison” triplets) but some cancer stem cells laugh at all that hoopla and sit dormant for months or years, and then decide for whatever reason, to start growing?

Are we aware that the 5-year mark of being “clean” after breast cancer treatment means little because breast cancer can easily return ten, twenty, thirty years later, even in the mildest cases?  Do we know that breast cancer is not curable, but it is treatable for many but not all?  Are we aware that someone dies of breast cancer just in the US every 14 minutes even on holidays?

Do we know that mammograms are not like getting a flu shot?  That this screening technique does nothing to prevent cancer; it just detects SOME cancers, while providing huge numbers of false positives causing unnecessary angst and needless biopsies?  Would we want a 40% false-positive rate in dental x-rays but declare it’s OK for breast cancer screening?  (“I’m sorry, Mrs. Spivey, but it looks like I didn’t need to do that root canal after all.  Oops”)

Do we know that we don’t even have a national goal for eradicating breast cancer?  (See http://www.breastcancerdeadline2020.org)  That scientists have only recently started to share their positive and negative research results to prevent repeating unsuccessful studies to eliminate wasted research time and money?  Are we aware that science has found several major links to know how breast cancer acts in the tiniest of cellular mechanisms, but they still don’t know what causes breast cancer to grow in the first place?

There is a lot of awareness that could be raised during Pinktober, but I haven’t seen much that means a whole lot.  It’s turned into a salacious time of the year focusing on “ta-ta’s,” “boobies,” and things that jiggle in the night.  It’s about selling the latest pink-washed wine or perfume or shin-guard.  It’s really not about raising awareness any more.  It’s about the selling of “pink” and exploiting all things feminine.