Tag Archives: Breast

An Open Letter to Breast Cancer Researchers: Are You Building Stairways to Nowhere?

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Are You Building Stairways to Nowhere?

Are You Building Stairways to Nowhere?

Dear Scientific Researcher,

What you do is extremely important and provides hope to those like me living with metastatic breast cancer.  The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.

I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies.  You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate.  Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask:  “So how does this study help us save lives or prevent the disease from happening in the first place?”

I realize how difficult it is to obtain funding for your labs and that some of you have had to dismiss some talented members of your teams due to lack of funding.  I have raised over $50,000 for breast cancer research and have lobbied dozens of times on Capitol Hill to secure your research dollars.   I feel your pain.

I have attended far too many funerals cloaked in pink ribbons.  Inspiring women, creative women, and yes, demanding women and men have suffered and died at the hands of this disease.  Each day, those who call themselves survivors, live with dark clouds over their heads housing thunderbolts of lingering fears that recurrence and death is in the forecast.

When I read funding proposals, it makes me aware how little you really know about curing breast cancer in humans.  You don’t know how many breast cancers start, how to accurately detect breast cancers, why mutations happen, why the immune system ignores these aberrant cells, how cancer cells can survive throughout the body and colonize in new locations, or how some cancer cells resist treatment.  Sure, you know some, but not enough.

We have spent billions of dollars on breast cancer research, from both the public and private sectors.  You have written thousands of peer-reviewed journal articles on the subject.  You have attended and presented at hundreds of breast cancer symposia, costing millions of dollars and thousands of hours.

Securing study funding, publishing papers and presenting findings seems to have become an end unto itself for some of you.  Finding real cures for real people appears to have been lost in the shuffle.

You study signaling pathways that end up worthless as targets for treatments due to the body’s ability to create redundant systems.  You study different dose levels of the same thirty-year-old chemotherapy treatments on lab mice and proudly boast that the new combination extends life a few months.  You repeat unsuccessful research studies because prior scientists failed to produce their findings.  You plunge into nanoparticle technology to find the right shape to fit into cell receptors in order to develop a toxic payload into cancer cells, and discover the keys can’t find the locks.  You study the neighborhood around cancer and try to figure out if that’s what fosters new cancer formation.  You spend years discovering new cellular mechanisms, write about them, and then look for your next project.

All of this:  Yet people keep dying.  At least one has died from breast cancer as you read this letter.

But are you building stairways to nowhere?

What happens after you publish your findings?  When you finish a project what happens next?  How are your results applied to get us any closer to actual treatments or prevention?  How do you hold yourselves accountable to clinicians, patients and the general public?  How can you make it less about “publish or perish” and more about saving lives?  How can you make sure you ask the right questions before starting any new project instead of building a stairway leading to nowhere?

Are you satisfied with your own progress?  How would you feel if someone undergoing treatment looks over your shoulder as you work?  Would you personally go to your friends and family, asking them to donate to the work you are doing right now?  If your own loved-one was diagnosed with breast cancer, what steps would you take to make sure they would not perish from the disease?

These are important things to think about.  I know you work hard.  I work hard at staying alive.  Both jobs are difficult.

What I’m asking you to do is to consider your role in the fight to end breast cancer.  Are you winning or losing?  What can you personally do to ask the right research questions that are not redundant or merely interesting, but are important to finally putting an end to breast cancer?  How can you make sure that your research makes a real difference and foster translation into the clinic?

I’m fighting the battle every day.  Please do what you can to fight with me.  Put an end to building stairways to nowhere.

Sincerely,

Sandra Spivey

#$@*-Off For Breast Cancer Awareness

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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.

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Illness Magnet

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It’s often said that “Opposites Attract” but what about people with illnesses or those who know someone with serious heath conditions?  Do they attract?

When I was originally diagnosed with breast cancer in 1995, I unintentionally became the hub of all things health and cancer related.  At work, people told me stories of Aunt Matilda who died a horrible death from colon cancer that eventually invaded her brain.  Or a best friend who, after battling breast cancer for four years, died leaving behind her five year old triplets to be raised by their unemployed alcoholic father.

Why did I have to know about these people?  What was I to do with such information?  It seems when some people hear the word “cancer,” they do a brain search for that word and blurt out whatever story is in their head about the subject, no matter how horrifying.  And the person who patiently listens to the story (me) tries to figure out if she’s meant to comfort the story teller, ask more questions about the situation, or detail how my situation might be different than the tale’s protagonist.

Is it not enough to have to face the burden of one’s own illness, but also have to shoulder the burden of emotionally supporting another person’s loss or health scare?  Or to provide specifics about my own health issues to someone who has thus far ranked as a “say Hi in the hallways” friend up to this point?

What I’ve surmised is that some people just don’t think.  They don’t know what to say when they learn of a serious health condition of one of their friends, co-workers or family members.  So they think about themselves and their experiences with the disease or related disease.  They share War Stories.   This is similar to situations pregnant women who have to listen to jaw-dropping stories of 48 hour labors or babies born with severe challenges.

When I discovered I that my cancer had spread to my bones, one woman at work checked in on me daily, letting me know how her sore back was coming along.  She had the condition for months and kept the pain under control with yoga and Tylenol.  As she spoke, my internal dialog was active “I realize she’s hurting, but how does telling me about it do anything for her or for me?  Yes, she is having a hard time standing up straight, but the pain in my hip makes it nearly impossible for me to walk at all.  And this wig is really itchy.  I need some alone time.”  I had to look around my office to see if there was a hidden camera recording each encounter, which would be played on some future reality TV program.  Was she going to burst out laughing, pointing to the camera and say “Gotcha”?

There came a time when cancer treatment caused my immune system to crash and I needed to stay away from people.  So, during weekdays, I my office as a bunker, equipped with jumbo bottles of hand sanitizer.  I was lucky to have a job where I could use the phone and email to accomplish most of my objectives.  By this time, many more co-workers knew of my condition.  The in-person visits became phone calls and emails.  People asked what I needed.  I had to figure out what I needed.  Maybe I just needed to be alone?

I found this great article on the American Cancer Society’s website:  “When Someone You Know Has Cancer”

http://www.cancer.org/cancer/news/when-someone-you-know-has-cancer

Another article “When Someone You Work With Has Cancer”

http://www.cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/whensomeoneyouworkwithhascancer/index

Both have outstanding tips, thoughtfully put together from those who have been through treatment for cancer and those who have supported them.

As I was working through my emotions on the subject of feeling like a health junkie dumping ground, I decided to take the high road.  The stories had to be told by the teller.  I could choose listen to them as a way to both help the other person and a way to understand that the other person was coping in the best way they could at the time.  I learned how to tactfully cut conversations short.  I learned that people wanted to help but didn’t know how.  So I developed ideas on how they could help:  send me funny cards in the mail; shoot me an email every once in awhile to tell me how they’re doing;, text me a humorous photo of something happening in their lives.

After all of this, I trained to become a breast cancer helpline volunteer and speak with those facing stage IV disease.  I’ve been able to share in the frustrations of other women feeling like they have become Illness Magnets in their workplaces or families.  And most importantly, I’ve given them some perspective on how they can broaden the conversation away from disaster stories to things that can actually help them get through the workday.

Yes, I’m still an Illness Magnet.  But, no, I don’t let every scrap of disease-related situations stick.