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I don't understand ...

10/6/2015

28 Comments

 
Picture
  We are six days into Breast Cancer Awareness Month (BCAM), aka Pinktober.  The cynical among us don't refer to it as awareness as we consider it more of a  "corporate profiteering off a deadly disease" month.

We here in the United States are truly viewing the world through rose-colored glasses as pink products and pink ads are everywhere.  The NFL has donned the traditional pink they wear at the beginning of this month (I don't think they wear it all month long) and races and relays "for the cure" are happening all over the nation.  One has to live in a cave to avoid the pretty pink of this time period.

Sigh.

This is my fourth October with breast cancer.  I've long struggled with how to be an effective advocate during the month, recognizing that many who wear pink do so in honest support of a loved one.  I don't mind that at all ... I just don't want them buying pink thinking that it funds research in any meaningful way.

During October of last year, I wore specifically designed tee shirts that had my logo on the front and some challenges on the back.  Each shirt had the line, "I am Stage IV.  Talk to me."  I worked more on a "stealth ninja" approach in how I handled pink product displays and to be honest ... my approach didn't work at all.  No one spoke to me.

I changed my approach this year.  I decided to be more personal and informative and to use imagery in how I communicated, both in words and in walking around.

I designed different tee shirts and brought them to the same shop that made my tee shirts last year.  I printed out what I wanted each shirt to say and worked with a young 20-something man at the layout table.  He was pleased that I had printouts of everything so that there would be no misunderstanding.

Three of the shirts have on the back, "What about the rest of me?" along with an image of skeletons with red coloring showing where I had breast cancer.  There is one small yellow oval representing my liver and it has four red dots in it representing the four tiny lesions in my liver that are assumed to be breast cancer. 

"What about the rest of me?" is in response to what I have on the front of the shirts.

Shirt one:  The Ta-Tas were saved, but ...
Shirt two:  No cancer here, but ...
Shirt three:  Second base was saved, but ...
Shirt four:  I'm seeing red (the back of the shirt just has the image on it with the red highlights.)

The young man quickly worked up the back of the shirts, but when we flipped them over to work on the front, a confused look cross his face.

"I'm not sure I get what these mean."

I explained that the fronts told the story that I had no cancer in my breasts.  He cut me short, "That's great!  Wow, that's just great!  That's what we're working for, right?"

He was so enthusiastic and authentically pleased.  I showed him the back of my shirt again with the images.  I pointed out where I had breast cancer in my body.

"I don't understand.  I thought if you didn't have breast cancer in your breasts that you didn't have breast cancer anywhere.  I thought the goal was to have no cancer in the breasts."

When I went to pick up the shirts, the woman who owned the shop was there.  I had worked with her last year.  Her face lit up and she exclaimed, "I remember you!  Look at you!  You look so pretty and healthy.  You must be cured!"

I unfolded the shirt and said, "Unfortunately, I'm not.  In fact, the cancer is worse."  I showed her the image and pointed out the cancer.

She looked at the picture and she looked at me and said, "I don't understand.  How can this be?  How can this be breast cancer throughout your body?"

A customer in the shop asked, "Are you on kidney dialysis?"

"No," I replied.  "My kidneys are fine for now."

"My mother died of breast cancer in her kidneys.  She also had big lumps on her back.  What's the deal with that?  Were those tumors?"

This woman was angry ... very angry.

I explained that it was likely her mother had cancer that spread to her skin and formed tumors on her back, but that, of course, I didn't know for sure.

The woman continued in her fury.  "I don't understand.  I don't understand how someone can die of breast cancer 12 years after they first had cancer and after they had no breasts.  I don't understand how breast cancer can be in her kidneys or how breast cancer can form those big lumps.  I just don't understand."

And that's the problem.  I'm finding that people honestly and truly don't understand.  When they see all the tantalizing campaigns that make breast cancer cute and funny, they genuinely believe that the answer to breast cancer is no cancer in the breasts. 

"Save the ta-tas," "Save a rack," "Check your headlights," "Save your bumps, check for lumps," "I heart boobies," "Save second base," "Breasts are man's real best friends," "Save the melons," "Save a life, grope your wife," "Cop a feel," etc ... these are all designed to insinuate that if these slogans are followed, then the beloved female in your life will be safe.

One friend told me that if her "Save Second Base" tee shirt reminded one woman to get a mammogram then wearing it was worth any offense that it may cause others.

I've repeatedly heard, "That mammogram saved my life!" when a lump has been detected and breast cancer treatments begin.  The unfortunate truth, though, is that mammograms don't save lives.  They allow for earlier treatments to begin, but until research has found a way to predict which tumors will be permanently obliterated, never to return, then it doesn't matter what a mammogram finds.  (Note, I am not saying don't get a mammogram.  I am saying that early detection is not the cure-all that it's been made out to be.  There are too many women who had early detection who have become metastatic and have died.  This is the truth that is not told.) 

My friend, Sheila, was furious when she was diagnosed with metastatic disease four years and eight months after her early stage primary diagnosis.  She was absolutely livid because she believed that if she made it to the five year point, she would have been cured.  It took a while for her to grasp that there's nothing magical for the five year point for most hormone positive cancers.  On top of the shocking news that she had metastatic disease, she also found out that her disease had changed over the years and had become triple negative.  It marched relentlessly throughout her body and she died 13 months after she was diagnosed metastatic.  (But you know what?  She's still listed as a Stage II survivor because she lived five years after her Stage II diagnosis.  That's another post for another time.)

Another friend was diagnosed with Stage I breast cancer six years ago at age 45.  She had a double mastectomy and radiation for her tiny 6mm tumor.  (That's about the size of a pencil eraser.)  Has been on Tamoxifen ever since.  Fast forward to now ... extensive metastatic disease in her chest lymphatic system and disease in her lungs.  But, according to statistics, she's included in those 98% survival statistics that you see advertised all over the place during October.

Their stories are two of too many.

I don't understand.

I don't understand how this is acceptable.  I don't understand why the sea of pink puts out a message of distortion.

Have you seen the ads trying to discourage people from smoking?  They portray the horrific truth of lung cancer.

Have you seen the ads about breast cancer?  They're pretty in pink and many of them are sexually tantalizing.

I don't understand.

What's wrong with this picture?
28 Comments
Leigh
10/7/2015 08:03:24 am

Thank you for writing this! It's so difficult to remain calm when talking about metastatic cancer because you find that so many people have NO IDEA what it is. Most individuals that are aware of metastatic cancer are medical professionals or have personable been affected.

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Sarah link
10/7/2015 09:54:57 am

Wow. Thank you for sharing!!

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Cindy
10/7/2015 01:05:23 pm

Thank you so much for sharing. I understand metastatic cancer all to well. I lost my husband to cancer 3 years ago. Cancer had a signature so when it spreads to other parts of your body, it's still called by the name of where it showed up first. My dad is battling pancreatic cancer. He was in remission for I year. Now he is back on chemo as they just found another nodule. I pray they find a cure soon.

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Ariane
10/7/2015 01:59:49 pm

Much appreciate your line of dicussion. Please let me soapbox a bit.
Your last idea about 'why not have a negative PSA about breast cancer, like the ravages of tobacco,' is a brilliant, but dangerously risky idea. It would be opposed tooth and nail by G.E., Astrazenica, Avon and SBK. The list goes on of the legions of trans-national corporations making a killing financially (and otherwise) as key players along with government and cancer institutes: all of them working in concert to preserve and promote the cancer industry, aka Breast Cancer Awareness. God forbid the promotion of a prevention message! That wouldn't fit in with pink boas, tiaras and apple-pie cheeked survivors. Consumer doners, 'Just hand over the cash and don't you dare suggest anything nefarious is going on here.'
Now, my critique does not include the extraordinary research and medicine that has saved lives. Much good had been and will continue to be done by the brilliant minds and caring hearts of dedicated health care workers.
However, it does include the myth-makers who benefit from the status quo. A duped public is not supposed to question why an increasing number of cancer patients are joining the ranks of metastatic disease status. More than likely, apart from genetics, (I am the first in my family lineages to have ANY cancer) environmental toxins or secondary cancer from radiation treatments from a first dx are the causes.
This pink hoax- what Samantha King calls "pink ribbon philanthropy" and what Gayle Sulik calls, "Pink Ribbon Blues' has got to end, soon.
If we join our voices-all of our voices-in loud, persistent, unapologetic, clear opposition to the marketing of this disease, the pink zombie effect just may start to wear off and the public just may start to wake up.
Keep talking to us. We need your voice.

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Lynne
10/7/2015 07:33:10 pm

Bravo.

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Kathi link
10/7/2015 07:54:59 pm

Amen. Great post. This really gets to the heart of the matter, which is that the average person does not understand the concept of metastases. Blows one's mind, doesn't it? And obviously, if they don't understand that, they don't understand what makes cancer -- any cancer -- so potentially deadly. Wow. Thank you.

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Elizabeth J
10/7/2015 08:59:59 pm

Excellent article. I've lost count of the people who do not understand how I can have breast in bones, liver, and distant lymph nodes and it is still breast cancer.
According to PET scan two weeks ago, I am now NED. (Praise God!) People also have trouble with understanding remission does not mean I have beat it or that I am cured or that remission is permanent. They don't get why I must stay in treatment. One lady even said, "Wow, you beat cancer 4 times now!"

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sandie
10/7/2015 09:34:44 pm

I had no idea until I got breast cancer. And then everyone says 'yah thats treatable, you got the good cancer'. Its almost impossible to explain thanks to pink washing, without appearing incrediably negative and ungrateful. I shall be sharing this around and hope they all read it.

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Nikki B.
10/8/2015 01:06:16 am

Thank you, thank you, thank you! Four years I've been explaining these very facts to no avail. I had my primary tumour removed in 2012 because it was the only active area at that moment but then it came back with a vengeance in my liver, kidney and rib. It's never returned to my right breast or my lungs. It likes my liver apparently. I've had to hear how good I look, how healthy, how I don't look like I have cancer. My response? You should see my PET scans then.

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statia
10/8/2015 04:20:55 am

This is so effing ON POINT. I have every email from my friend during her initial journey. We emailed daily, all day. I am pretty much over pink now.

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Susan Condon link
10/8/2015 04:32:54 am

I have learned more about breast cancer this past week reading your blogs than I have in the last 30 years! Thank you for changing the status quo. Keep sharing!

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Jan James link
10/8/2015 06:02:31 am

Thank you SO much. Will you please email me permission to repost your article with your name as a guest blog on www.provisionproject.org? God bless you!

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ATS, MD
10/8/2015 08:19:43 am

Your post is spot on! Thank you. I am a radiologist and I read PET scans all the time on metastatic breast cancer patients who started out as early stage. Sometimes even the oncologists call me in disbelief that their patient has a met just months after their stage 1 diagnosis. Some doctors I work with tell me that my stage 1 breast cancer is cured. Not my own doctors because they know better but other doctors including an ob/gyn and even a radiation oncologist! The average non medical person doesn't stand a chance if the medical community can't get it right either. I would love to see commercials similar to the anti smoking campaigns. Mammography does not save lives. It can't even detect many cancers until they are large. It did not detect mine and my mammograms are read by multiple colleagues. I found my 1.4cm cancer on self exam and confirmed it by doing my own ultrasound. Even after I found it, the lesion was not detectable on mammo. There has to be a better way.

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Susan Vitus
10/8/2015 01:50:14 pm

i have endometrial cancer, diagnosed last year, had surgery and radiation. I follow with the Gyn Oncologist every 3 months. I pray it did not shed cells into my lymphatic system and I pray I will not get a secondary cancer from the radiation. I am a nurse so I know all too well this can occur. PAP smears are the recommended every 1-2 years but the test does not pick up endometrial cancer. There is so much more research needed for breast, uterine and ovarian cancer. Knowing where to donate to research without profiteering or large money to executives should be available in the media. Best wishes and prayers to everyone with these cancers.

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Elle
10/8/2015 01:59:10 pm

Just wow. It's so true, they just don't understand.
Let's continue to educate them. They'll get it.
I hope.

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Kathy
10/8/2015 02:37:57 pm

Thank you for your effort to educate people about stage 4 Breast Cancer. Mine spread to spine and scapula. I was stage 1 no nodes +. Had clean margins from lumpectomy. Radiation to breast. No cancer in boobs. No it spread to other areas. So sad how very little money goes to our stage research and sooooo much goes to education. I think that is the category for line my pocket.

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Reba
10/9/2015 10:29:01 pm

Loved your article! Your nailed the frustration that so many of us have. And I'm glad to see you are NED! If you believe in God, whatever you conceive Him to be, may He bless you and yours. Love and hugs to you!

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Grant Gilchrist
10/8/2015 03:16:55 pm

Thanks for this. I don't do any of the pink events any more. I still donate to a few anti-cancer research funds, but I can't handle the pink stuff.

My wife died in 2011 at the age of 45. She had inflammatory breast cancer, which is only 1-2% of all breast cancers and starts out already in your lymph system as Stage IV. She was metastatic before we even knew the cancer existed.

It was a very hard learning curve for us because we had to "unlearn" what "everybody knows" about breast cancer. In other words, get the chemo, get the mastectomy, and you'll be done. Nobody mentions brittle bones, difficulty breathing, massive painkillers, or breast cancer in your spine, or your lungs, or everywhere else in your body.

People mean well, but the "normal" breast cancer culture was hard for Michele to deal with. She fortunately found a support group specifically for metastatic patients, because the more common breast cancer groups were talking about reconstructive surgery and body image while the metastatic group was wondering who would die next month. She went to the local "run for the cure" and appreciated the massive effort, but she objected to being invited to "survivor" events and sitting in the "survivors tent" because she knew she wasn't going to survive.

The doctors, nurses and staff were all fabulous, especially at the hospice, and thanks to new science coming from the research, we got 3 years instead of the original estimate of 6 months, so I am so very grateful to everyone who donates. But it's hard to watch the TV and get the emails.

The pink culture tells a true story, and those people's pain and fear is real, but it's not the whole story, and to those who've lived with metastases, it feels kind of Disneyfied. Thanks for the blog.

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Denise
10/8/2015 03:33:46 pm

Thank you for this. There are so many people out there who need to understand what us #lifers are going through.

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Andrea
10/8/2015 08:54:58 pm

I am a two time ovarian cancer survivor and it drives me crazy that with all the technology and information systems available to us, people are still misinformed. Why do we need to put a pretty bow on something to create awareness?

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Michael Kovarik
10/9/2015 05:41:17 am

Thank you. In September 2015 I was diagnosed for the third time, this time with Stage 4 Metastatic Breast Cancer. As my head clears of what has transpired, I am grateful to the many voices speaking up on this journey. Why? I don't understand. How did this happen? Each question and statement carries the frustration we all feel and live with. This is more than a ribbon. Thank you for articulating all that I and so many others feel.

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Marilyn Chapman
10/9/2015 07:40:34 am

Hi! I completely understand your anger and frustrations! I hope you don't mind me adding a little positive to your post.
Quick version of my story:
I was 39 when I found the lump in my breast. Stage 1 Her2Neu Pos + ER Pos. Had mastectomy, chemo and herceptin for 1 year. Then tamoxifen for 71/2 years. This August I found metastasis disease in chest cavity and bones, stage 4 BC. We were excited that it was BC again as it means it is treatable!
1) I enjoy and embrace BC Awareness month. I personally know several women who found their BC early due to the awareness, which is still so very important! Yes, it can come back later, but better to be later than have it metastasize in the first place!
2) the fundraisers really do make a difference in research! I have personally been the receptor for Herceptin and now the newest drug, Perjeta, for my type of BC! Without these fundraisers, our scientists wouldn't have the funds to not only discover, but properly put to test to get FDA approved!
It's great that you are speaking your mind, as most people really don't understand what we are going through, however keep your chin up, your thoughts positive, and be a good example to others that may either have to go through this themselves or have someone close to them go through it.

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Mattie
10/9/2015 09:14:20 am

Thank you, thank you

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Teresa Annis
10/10/2015 11:57:35 am

Ads for Breast Cancer need to change. Women and Men need to see how deadly it is. I have had it and my father in law had it stage 3 for him..Mine was found early but what is early?? Just cause it is found when it is small is not a guarantee you are cancer free forever. It also depends on what type of cancer you have.. an aggressive or slow growing cancer... Mine was not aggressive but my good friend's was and she did not even last a year and they did everything..Thank you so much for sharing your story. Around our area it is pink tutus and stopping folks and putting them in the tutu and taking a picture. Does that bring awareness? I do not believe it does at all..If for smoking they can show people who are dying from it they need to show those with breast cancer and how it effects them..its not pretty and they need to see that!

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Deb W
10/10/2015 12:08:36 pm

Wow, lots of info i never realized, or thought about. Thank you so much

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Debbi
10/10/2015 08:23:23 pm

Wonderful article!
Just a note about a relatively unknown Breast cancer, Inflammatory Breast Cancer.
The most aggressive and most deadly. Nobody wants to talk about us...
And I DETEST the names of those inane groups such as 'Save the Tatas' ~ they just don't get how offensive they are.

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veda leal
10/10/2015 09:14:57 pm

God Bless you and THANK YOU, for this. I have Stage 4 Breast Cancer mets to bones and IBC..Talk about a mouth full, if one more person tells me I look great I will scream..Sometimes I wish I could pull up my top and show them the mess of a chest I have..Fighting since 2009, and anyone under stage 3 does not want to hear my story..no, no, stay away..We are hidden like lepers, go to Inflammatory Breast Cancer on facebook..It will break your heart to read about these young women with babies fighting this disease..I have walk for cancer, raffle for cancer, but when I needed help..Ms. K..went no, no no, are money is for Research..This does not pay for my chemo, or meds..for now on my cash goes towards my grandkids..God Bless, Veda

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Suzanne
11/2/2015 04:50:39 pm

Thank you for writing this. I have shared it with everyone I know. I suspected there was a lot more to breast cancer than the pretty pink ribbon and clever slogans...and now I know.

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    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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