Awareness to Awareness

Filed under blog

A guest post from Katie Ford Hall, of Uneasy Pink

We’re well into Pink October, 2010, but this year I sense a shift in awareness about awareness.  The media has criticized pinkwashing and silly viral memes trivializing cancer with sexual innuendo.  Tough questions are being asked, like why so little progress is being made to reduce mortalities despite all of this awareness?

The usual counterpoint is that while awareness campaigns might be for lightweights, they’re harmless.  Right?

No, not so much.

The worst day of my life, no hyperbole, was July 14, 2008.  While walking out the door to take my kids to summer camp, I received a phone call with biopsy results.

A month before, I had my second annual mammogram at a well-known urban cancer center.  Like you and everyone else, I was aware of breast cancer.  Since neither of my parents nor their eight collective siblings had it, I wasn’t worried.  Still, I performed self exams, had annual check-ups with my gynecologist and got my baseline mammogram at age 40.  I’d never been seriously ill or hospitalized; I exercise and eat pretty well.

Bottom line: I am a well-educated middle class suburban mother.  I go to my kids’ soccer games, track meets, school plays and church on Sundays; help with homework, bandage boo-boos and generally play by the rules.

But in June, doctors saw an odd lymph node in my armpit during my standard mammogram.  At age 41 I didn’t realize that I already had the two biggest risk factors: being female and getting older.

After that phone call, my summer turned frantic.  I had mammograms, ultrasounds, biopsies, MRIs, bone scans and CAT scans.  One doctor led me to believe I might have lung cancer and another recommended a radical operation.  I switched my entire medical team. Twice.  On August 28th I finally learned the answer.  I had a 1.7 cm tumor of invasive breast cancer in that suspicious lymph node and an 8 cm tumor in my right breast.

How is it possible that all of the exams, mammograms and professionals missed it?  Early on I’d been told my breasts were lumpy, like most premenopausal women.  Everything felt and imaged was assumed benign until the cancer spread to my lymphatic system and became life threatening.

Two years later, I’ve been through chemotherapy, targeted therapy, two surgeries and radiation.  I’m beyond grateful to be here, but forever scarred and uneasy.  It’s disturbing that a tumor as large as mine, too big to even operate on before chemotherapy intervention, evaded detection for so long.  It’s disturbing to consider how easily this savvy and empowered woman was lulled into a false sense of security by trite awareness messages.  October after October, the pink ribbons went up and my breast cancer progressed unnoticed.

It’s past time to give up the feel-good message of October and take a hard look at breast cancer.  In 1991, 27 per 100,000 women died of breast cancer.  Sixteen Breast Cancer Awareness months later, 24 women per 100,000 died.  Mortality rates for African Americans have actually increased over the same period.

Billions of dollars have been raised under the breast cancer umbrella, but we still don’t have good detection methods for women under age 50.  Little progress has been made in reducing breast cancer fatalities.  Outcome disparities break down along the lines of ethnicity, class and access to health care.  We don’t have a cure.  We don’t know the cause.

But every October, we have pink ribbons festooning every aisle in the grocery store from toilet paper and cat litter to chips and alcohol.  How can that be harmless?

18 Comments

  1. Posted October 14, 2010 at 3:20 pm | Permalink

    Thank you for this post, and for your comment that, “It’s disturbing to consider how easily this savvy and empowered woman was lulled into a false sense of security by trite awareness messages.” I’m sorry that you have become one of the “hidden” costs of trivializing the disease through commercialization and false advertising.

  2. Posted October 14, 2010 at 3:30 pm | Permalink

    Thank you Gayle. I feel so grateful to be here at all, but it does anger me to hear October’s campaigns.

  3. Posted October 14, 2010 at 3:55 pm | Permalink

    Dear Katie,
    Lately I’m almost fixated on the paradox that: the more money and “awareness” we throw at medical and social ills, the worse they become. Case in point your comments here about breast cancer. Another: 10,000 nonprofits and ngos in Haiti and poverty the worse for it.

    How to unravel this secret?

    Thank you for your clear-eyed and honest-voiced presence.

  4. Posted October 14, 2010 at 5:22 pm | Permalink

    As always, you give me a ton to think about.

    You amaze me.

  5. Posted October 14, 2010 at 6:16 pm | Permalink

    Such a great article, Katie.

    I have to say, I’m almost to the point where I ignore all the pink. I really do. Even though I know people who have and are struggling with the disease. I know–how HORRIBLE of me, right? But it’s overload. It’s everywhere. I see women on the back of Ziploc containers, in my Kroger aisles, pink everywhere–the sexual innuendo on FB. It’s a combo of this desensitization AND the thought “Oh, there’s plenty being done” that’s can prove detrimental to the cause.

  6. Jennifer Baughman
    Posted October 14, 2010 at 8:33 pm | Permalink

    I have a very different perspective on this issue and by sharing it here I mean no disrespect for Katie or anyone else. Katie, I commend you for the bravery, strength, and courage that you’ve been forced to pull from within yourself in order to perservere through your battle. I know the life you are living and it is hell. With that said though, I don’t see the doom and gloom that I keep hearing from people all over the internet the last few weeks.
    Tuesday of this week marked 19 years ago that I layed my Mom to rest as a result of breast cancer. And only 4 years prior to that my grandmother (maternal) was layed to rest for the very same reason. Back in that day, 20 something years ago, I proudly wore my pink ribbon everywhere. And every one who saw me pointed to the ribbon and asked what it was for. “What does that pink ribbon mean?” And that was my opening to educate someone on the disease that effects so many people. So many women I would talk to were too scared to get a mammogram, afraid it would hurt. Or they had no money to have one done. The company I worked for was not the least bit willing to help with raising funds or bringing awareness to breast cancer. I begged them to let me do a fundraiser every October. They let me do it but I had to do it all on my own and take vacation days to pull it off. It was so frustrating year by year when they turned up their nose and acted as if my cause meant nothing and was a waste of time. I didn’t let them hold me back. And right along beside me were many other organizations fighting to get a place to ‘spread the word’. I eventually left that company and a woman picked up where I left off and continued the October fundraiser. Finally, after 6 years of holding this fundraiser the company decided to be a partner and support the cause. And it took just as long for many other people to get on board as well. The other day I walked into Kroger and I was stunned by all the pink. It made me stand there and take it all in for a minute. I couldn’t help but think back to those days when the color pink meant nothing. I do think that the pink can be overdone. However, this year I am loving it. I see it and think of the breast cancer survivors–You Go Girls and Guys to! I see it and I remember those I’ve lost, may they rest in peace. I see it and I make a new commitment to myself to keep up with BSE. Pink for me is a symbol of how far the breast cancer crusade has come. My Mom participated in 2 different clinical trial chemo protocols at the National Cancer Institute. Within a couple of years those ‘experimental’ treatments became the standard of treatment for all women. And then within another couple of years there were even better chemo drugs out there that became the ‘new’ standard of treatment.
    I completely agree that progress towards a cause and a cure is not moving nearly fast enough. I hope that I don’t get staked for this but I believe that if all the scientist working on a cure for breast cancer right now all came together and shared notes with each other, we’d have a cure in no time. That isn’t going to happen. It’s the polatics, the ego’s, the recognition that’s holding us back from real progress. Think about it….John Doe discovers a cure for breast cancer or Hundreds of researchers from all over the world discover a cure for breast cancer. In many cultures its got to be John Doe’s name in lights, unfortunately, imho.
    I guess all this to say, I choose to see the glass half full. I feel optomistic about what tomorrow will bring. And it’s not b/c I’m ignorant to the devastation of this disease. It haunts me everyday as well. It so happens that I found a lump in my breast on Monday of this week. The next day I did the mammogram and ultrasounds and everything came back fine. But what if they are wrong? I can feel it. They could feel it. But the machines didn’t see it. And I supposed to accept that?

    All my best to you Katie.

    Jennifer

  7. Anita
    Posted October 15, 2010 at 10:11 am | Permalink

    Hi Katie,

    I also hate the pinkwashing of October. There is so much work to do on the cause and the cure side of all cancers, not just breast cancer. My mom had breast cancer and died and I hate pink ribbons, eventhough a survivor of breast cancer gave me one. I never wore except when it was given to me. I do volunteer work at WCRC and I see the survivors of cancer and hear about the deaths from cancer too.

    Katie,
    I wish you well and continued success on your cancer journey. May you live to speak out for many years to come in October or any month.

    All my best,

    Anita

  8. Denise McConachie
    Posted October 15, 2010 at 10:32 am | Permalink

    Jennifer,

    I don’t think there is a breast cancer patient alive today that doesn’t recognize the value of efforts that went into bringing awareness to the disease. To people like you I extend a heartfelt “Thank You!” for your work and dedication and the difference you have all made in where we are now.

    As someone dealing with cancer treatment I find myself somewhat ambivalent regarding Pinktober. On the one hand there are many companies that are donating to causes that may one day find a way to prevent the disease – but on the other you have marketing companies getting rich off of more “Awareness” brochures and campaigns aimed at the well intentioned public. Or other companies that blatantly festoon their products in pink without a WORD about supporting prevention/cure/treatment. Just by BEING pink they claim to raise awareness.

    Well… Talking to my daughter last night I discovered that everytime she sees pink, she thinks of me. She’s amazed at how much pink garbage is being marketed this month. Cancer’s Christmas Season…

    So I now have a visual of my face on a pink milk carton. I didn’t ask for it to be there. And I don’t want to be in this club/sisterhood!!! I loved joining the Mommy Club when I had my daughter, but this club is something I’m being dragged into and all the smiling, happy Joy-Joy marketing about survivorship etc. is not going to make it any easier – and it’s not going to fix the fact that I ended up homeless and it isn’t going to pay the bills that didn’t get paid when I couldn’t work, and it’s not going to fix my memory issues or the depression or chronic fatigue I still suffer 6 months out.

    As the T-Shirt says, and please pardon me but this sums up my cranky attitude quite nicely – “F*ck Awareness – Fund a Cure”.

    Denise

  9. Posted October 15, 2010 at 10:51 am | Permalink

    Here is a comment that I posted to http://gaylesulik.com/?p=2535 earlier this month. I think it’s appropriate to reproduce it here as part of this important discussion.

    At age 33, by chance, I discovered what simply felt like a hardening of tissue in one of my breasts. There was no pea shape, no lump, no hard edges, no pain, and nothing to really suggest anything was amiss except a feeling that I had that something didn’t feel right. Upon meeting with my nurse practitioner I was examined (where she said she couldn’t feel anything), asked some standard questions pertaining to any known risk factors (in my case no family history, no smoking, no obesity etc, no, no, AND no !). I was summarily excused and told to perhaps consider breast massage and come back in 6-months if I still felt something. After begging and pleading, because I just felt something wasn’t right, I was given a prescription for a sonogram, since mammogram wasn’t considered appropriate for my age. Once again, nothing was found, and Nurse P summarily waved me off once again.

    At this point, many people would have given up and put this feeling out of their minds. But something inside me wanted definitive answers. I called a trusted friend and got an appointment with her ob-gyn. Once again, this Doctor couldn’t feel anything nor did a second sonogram show anything conclusive. But this time was different. The Doctor listened to my concerns and agreed to send me for a mammogram that day. It came back highly suspicious. Two days later I went for a biopsy and had the diagnosis. Advanced stage invasive ductal carcinoma with axilliary node involvement. Tumor was large but with extremely undefined margins, hence it never felt like much at all, except to me. Oh, and the kicker, turned out I was BRCA1 gene positive as well, despite no family history whatsoever.

    So my point in all of this, is that I tend to tune out any discussion that I hear about screenings and awareness as touted by the pink ribbon brigade. My case completely fell outside any of the advertised guidelines related to screening, statistics and risk factors. In fact, it was adherence to those very guidelines that I believe caused that Nurse Practitioner to tune out my concerns and wave me away. I would wager that if I had taken her advice to come back in 6-months, I don’t think I would be here today writing this post, some 7 years later.

    The touted guidelines failed me, and will continue to fail those women who fall outside the statistical norms. Let’s not get caught up in statistics when it comes to our own bodies. Let’s have policies and a health system that encourages us to be our own advocates. Let people make up their own minds, in consultation with the medical professionals, as to whether they want the stress and other risk factors associated with cancer screenings. If you think something is wrong, find your voice. Be heard. You might just save your own life. You are so right. There is no one size fits all approach to screening (and treatment AND research) for this insidious disease and this is the danger of a campaign that is primarily focussed on mammography by questionable statistics.

  10. Posted October 15, 2010 at 11:25 am | Permalink

    Katie,
    Thank you for this wake up call. Your writing has a way of getting to the core–something that any woman–EVERY WOMAN–can relate. Most of us don’t think it will happen to us, yet we see our mothers, sisters, friends and yes, even our own lives, trasnformed by cancer. Thank you for sharing your courageous writing, your stark reality call and your healing journey. I intend to send this blog to all of my women friends.
    Terri Spahr Nelson

  11. cwh
    Posted October 15, 2010 at 11:52 am | Permalink

    Awareness? What kind of a rock would you need to be living under not to be aware of breast cancer? Sometimes I wonder if people are aware that there are other cancers that kill women. Enough with the awareness, the cuteness, the inappropriateness of various FB campaigns (bra color??!) — we need to figure out what causes this and eradicate it.

  12. Posted October 15, 2010 at 12:41 pm | Permalink

    I performed mammography for 36 years, yet my own breast cancer showed up on a breast thermogram. I then had a digital mammogram which showed NOTHING! I now perform Thermal Imaging, (thermography), which can show a breast cancer 8 to 10 years before mammography. Also, I now believe that the 30 or so mammograms I had over my lifetime was the cause of my breast cancer as I have no other risk factors. Thermography is radiation free and there is no compression. When is this country going to break free of the cancer industry, (of which mammography is a huge money maker), and support safe, painless and affordable screening such as thermography.

  13. Posted October 15, 2010 at 12:54 pm | Permalink

    I just wanted to thank everyone for the well-wishes and feedback. In my dream world, next October will be breast cancer eradication month and then we will no longer need Pink October. Peace all…

  14. Posted October 15, 2010 at 12:55 pm | Permalink

    Thank you for this. It’s wonderful.

    Judy

  15. Laura
    Posted October 15, 2010 at 2:05 pm | Permalink

    I don’t just want a cure found. I want them to figure out how to prevent it. Speaking from personal experience (I’m a breast cancer survivor), going through the cure really really really really sucks and I wouldn’t wish that journey on anyone (even my worst enemy). If they could somehow put a large focus on finding an immunization against cancer then we wouldn’t need to raise awareness or have to keep working on a cure. It would be eradicated.

    Laura

  16. gloria morgan
    Posted October 15, 2010 at 7:50 pm | Permalink

    I was advised,by my naturopath and a nurse practioner friend, to have a baseline mammogram at 35. I did request one but kaiser was resistant. I persisted and they gave me one. They caught a 1 cm tumor that had spread to one lymph node. I underwent surgery, chemo and radiation. still here, 20 years later to tell the tale.
    I am fed up with the pinkwash crap and want to see some real results with all the money, like a cure and some explanations for what causes it.

  17. Mary
    Posted March 12, 2011 at 12:11 am | Permalink

    I had my mammagrams faithfully every year for 10 years and they never showed my cancer. I have dense breasts and was never told that basically nothing could be seen on a mammagram because of this. I was “informed” of the importance of screening, but apparently my doctors weren’t “informed” that when lesions can’t be seen on a mammagram, a different type of screening should be ordered. It is a shame that so many women don’t know this and aren’t told this by radiologists. Unfortunately, it seems that the only real awareness being raised is to have a mammagram. Women should be told to actually get the radiologist’s report and read it themselves, and then know ALL the signs of cancer, not just a lump. Then women need to be persistent and never back down if they think something is wrong.

  18. Posted June 26, 2015 at 3:33 pm | Permalink

    Hi Katie,

    My name is Donna; I want to commend you on your strength. It takes strength to switch your medical team like you did, to call out the culture of parading ribbons as I’m sure many will find it controversial, and most importantly, even though you did not say it, I am sure through your ordeal you haven’t neglected your duties as a mom.

    I volunteer at a breast cancer survivorship organization and have seen many women who have grown to be sisters to me go through similar ordeals; it never gets easier for me to hear the stories but I always like to tell you women that you have my support behind you in your battle.

    What resonated with me most was your mentioning of how breast cancer death rates in African American women have actually increased; it is for this reason that I volunteer at the organization that I mentioned. I pray that you will find good health, and continue to write with such a strength that many women facing this battle cannot find within themselves, in hopes that it will ignite a flame in them as well.

    Warmest Regards,

    Donna Williams

One Trackback

  1. By Precious Blog on November 8, 2016 at 4:04 pm

    Recommended Breast Cancer Awareness Always Remember

    […] andard questions pertaining to any known risk factors (in my case no family hist […]

Post a Comment

Your email is never published nor shared. Required fields are marked *

*
*

HOME