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kakteed's avatar

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Here we are, nearly halfway through October, and Laura Wells can’t wait for Breast Cancer Awareness month to end.

Not that she has any time to spare for walks and such: Wells is among some 155,000 women in the United States living with Stage IV breast cancer, the worst kind, the type that can't be cured.
Moreover, this 45-year-old California woman -- and other late-stage cancer patients like her -- feels the annual celebration offers more of a slap in the face than any solace.

“Some women hate October,” says Wells, 45, a mother of three from Costa Mesa who was first diagnosed with breast cancer in January 2007 and learned two years later that it had metastasized, spreading to her lungs.

They call it “Pinktober” and that’s not a term of endearment.

Instead, it refers to the barrage of pink-themed promotions, events and activities during October -- everything from pink stickers on football players’ helmets to pink lights illuminating the White House -- that seem to highlight the bright side of battling breast cancer, all without acknowledging the women living in its darkest shadow.

“For Stage IV women, it’s because we’re dying. The pink thing is too much about early detection and prevention. The Stage IVs don’t feel included,” says Wells, who detailed her thoughts in a recent blog post that grew out of her online support group, Inspire.

The month’s activities -- the walks and runs and pink-ribbon pizza parties -- focus mostly on cases of new breast cancer diagnosed in the U.S. each year, which total 290,000 according to statistics from the American Cancer Society. Five percent of those women are diagnosed at Stage IV.

What’s not acknowledged, say Wells and other late-stage patients, are the nearly 40,000 women who die each year -- and those living with incurable disease.

“Ironically, with advanced metastatic disease, all the great things ‘pink’ stood for no longer applied to me," Wells wrote. "I was beyond ‘prevention,’ beyond ‘cure,’ beyond ‘survivorship,’ beyond ‘pink.’"

For Stage IV patient Kimala Clark, 47, of Fort Wayne, Ind., it feels like a betrayal to walk into a grocery store and be “bombarded with pink.”

“I can’t celebrate because I’m not a survivor,” said Clark, who was diagnosed in 2010 with an aggressive Stage III cancer that quickly advanced. “There’s not a cure.”

That’s a common refrain among many late-stage patients, says Ginny Knackmuhs, a board member for the Metastatic Breast Cancer Network, an advocacy agency.

“The message has really been skewed,” says Knackmuhs, 61, of Wyckoff, N.J., who was diagnosed with Stage IV disease in 2009. “It’s so associated with selling products and shopping and dubious product endorsement.”

For instance, one breast cancer awareness group, the Breast Cancer Fund, this week criticized Progresso, the soup brand owned by General Mills, for launching a fundraiser that urges consumers to send in soup-can lids. The problem? The lids are lined with the chemical bisphenol A, or BPA, which has been linked to breast cancer.

“It’s pretty ironic that Progresso is raising funds to fight breast cancer while also using a chemical linked to the disease in its cans,” Gretchen Lee Salter, the group’s policy manager, said in a press release.

Tom Forsythe, a spokesman for General Mills, said that food-safety organizations, including the U.S. Food and Drug Administration, continue to support the safety of BPA, but that his firm is working as quickly as possible to find BPA alternatives.

“We have publicly committed to transitioning to alternatives that do not incorporate BPA as soon as viable alternatives are identified,” said Forsythe.

In addition to questionable product endorsements, late-stage patients protest what they believe are unfairly limited funds for metastatic breast cancer research and a cursory focus on the end stages of the disease.

In all of October, for instance, only Oct. 13 -- Metastatic Breast Cancer Awareness Day -- focuses on late-stage disease, Clark says.

“I really would have liked to see that be more than one day. I think it’s sad that there’s 31 days in October and we have one day,” she says.

Officials at Susan G. Komen for the Cure, the leading breast cancer awareness agency (named for a woman who died of Stage IV breast cancer), say they understand the desperation and urgency that many late-stage cancer patients feel.

“We’re certainly very sympathetic to that,” said Andrea Rader, a Komen spokeswoman.

At the same time, the agency believes that the fanfare generated by Breast Cancer Awareness Month continues to raise funds that are used to help women all along the continuum of breast cancer, from prevention through prolonging survival.

The group spent $79 million over the past six years on research for metastatic breast cancer causes and treatments, according to updated documents provided by Rader.

“There are also people who say we don’t spend enough on prevention,” she said. “Where people tend to be on the breast cancer spectrum is what they tend to feel is most important."

Some late-stage breast cancer patients say they’re glad for an effort to raise wider awareness, even if they don’t embrace the pink themes themselves.

Rebecca Meyer Carr, 46, of Lafayette Hill, Pa., has been in remission with Stage III breast cancer for nine years. She says she doesn’t mind if a company sells a pink hammer, for instance, if it helps draw in someone who was not necessarily affected by breast cancer.

At the same time, she might not buy it.

“For me, personally, I’m not the person who wears the pink ribbon,” Carr says. “If I’m feeling well enough to walk around the block, I don’t want to look down and see pink ribbons.”

Carr is among many women who have found support through support groups just for late-stage breast cancer patients. Inspire and the drugmaker Novartis recently teamed up to overhaul the Advanced Breast Cancer Community website.

What’s most important in the discussion, says Wells, is to acknowledge the entire spectrum of breast cancer, not just the hopeful beginnings when a cure may still be possible.

That means pushing past the natural fear that so-called “newbies” have of late-stage patients and urging a more realistic notion of the disease.

“I want you to be aware of me,” Wells said. “What does breast cancer awareness mean if you won’t even acknowledge that I’m fighting for my life like you are -- except I’m going to lose?”


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Super Fightin Prototype's avatar

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I think pointing out the focus on prevention rather than what to do in the later stages is an interesting observation. Sometimes people don't realize until it's too late - what are they supposed to do?
scorpiodragon7's avatar

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Hearing someone has incurable cancer is a hard blow to take, but finding out that all of the focus is really on the early stages I feel like I should've seen this sooner. While yes getting women in to get tested is important, what about those who can't be cured (yet)? I think there has to be an organization that just focuses on late stage/ incurable cancer treatments out there somewhere. There needs to be a balance and we're not there yet. I don't really buy pink ribbon stuff anyway because at least part of the items' companies don't even send in money to cancer research or the fund raising organizations.
David2074's avatar

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To me this comes off as kind of a whiny "look at me I'm a victim!" story.
Breast cancer is bad and I'm sorry this lady is dying but to say breast cancer awareness programs do not acknowledge many women die from breast cancer is ludicrous. The whole reason for a big push for awareness and early detection is because many women can and do die from it and those who don't die are still usually profoundly affected by it. I think it is common knowledge that some people die from ANY form of cancer (skin, breast, lung, prostate, colon...) It does not mean that those who advocate for colon or prostate inspections for early detection or for wearing sun block and getting skin mapping for early detection of skin cancer are not acknowledging that some folks die from those things.

What, exactly, is this woman proposing they do to appease her? Stop trying to promote awareness of breast cancer and early detection because some folks like her are dying from stage 4 cancer?

I do agree that some of the 'pink' advertising seems a bit dubious. Everybody and his brother is trying to sell you something in that pepto-bismal pink color at an overinflated price because some small percentage of it might go to supporting breast cancer research. For most folks the money is probably better spent with a direct donation to the cancer society.
Eternal Marionetta's avatar

Witty Phantom

I had a growth that my doctors thought was cancerous. Good thing it wasn't cancer.
My point is, cancer is ******** scary. I literally burst into tears when I heard that the growth in my neck might have been cancerous.
I would really hate to learn that I have an incurable form of cancer. I really hope that they find some sort of cure for it.
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David2074
What, exactly, is this woman proposing they do to appease her? Stop trying to promote awareness of breast cancer and early detection because some folks like her are dying from stage 4 cancer?


I agree with this, It's true that there isn't much attention paid to women in the later stages, but no one in this article even suggests what kind of attention they want. And a question arises: do most women in the late stages want to be placed in a spotlight?

The pink campaign is twofold: (1) awareness of and early detection of the disease so a woman won't reach the later stages; and (2) fundraising for research for a cure, even in stage 4.

I'm not unsympathetic. Three of my girlfriends have died of metastatic cancer than began in their breasts. But not one of them ever said, "I hate pink." All of them participated in cancer awareness and fundraising events, even when they were terminal. One, a teacher, even came up with a prodictive and cathartic way for her students to express their feelings about her cancer. I think they were more typical than the bitter women in this article.
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Super Fightin Prototype
I think pointing out the focus on prevention rather than what to do in the later stages is an interesting observation. Sometimes people don't realize until it's too late - what are they supposed to do?
They are supposed to receive palliative care. One hopes their doctors are not stingy with painkillers, as many are.
Lady Leopardess's avatar

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Yeah this is gonna seem harsh but October is also Blindness Awareness month and yet the Breast Cancer gets 98% of the attention.
She should be glad that it gets so much attention. I think Breast cancer gets the most attention probably out of all the cancers.
And to my specific eye condition , it gets a "month" but it doesn't mean anyone is even AWARE of it , except particular circles of people and my other eye condition is super rare so they have it on the leap day so it only happens once every four years.

So she should be happy with the vast amount of attention that breast cancer gets.
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David2074
To me this comes off as kind of a whiny "look at me I'm a victim!" story.
Breast cancer is bad and I'm sorry this lady is dying but to say breast cancer awareness programs do not acknowledge many women die from breast cancer is ludicrous. The whole reason for a big push for awareness and early detection is because many women can and do die from it and those who don't die are still usually profoundly affected by it. I think it is common knowledge that some people die from ANY form of cancer (skin, breast, lung, prostate, colon...) It does not mean that those who advocate for colon or prostate inspections for early detection or for wearing sun block and getting skin mapping for early detection of skin cancer are not acknowledging that some folks die from those things.

What, exactly, is this woman proposing they do to appease her? Stop trying to promote awareness of breast cancer and early detection because some folks like her are dying from stage 4 cancer?

I do agree that some of the 'pink' advertising seems a bit dubious. Everybody and his brother is trying to sell you something in that pepto-bismal pink color at an overinflated price because some small percentage of it might go to supporting breast cancer research. For most folks the money is probably better spent with a direct donation to the cancer society.

Yay! That's what I thought!
On a more serious note... Instead of being angry at the month, why not look at it as a way of showing what can happen if a cure is not found?
David2074's avatar

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Lady Leopardess
Yeah this is gonna seem harsh but October is also Blindness Awareness month and yet the Breast Cancer gets 98% of the attention.
She should be glad that it gets so much attention. I think Breast cancer gets the most attention probably out of all the cancers.
And to my specific eye condition , it gets a "month" but it doesn't mean anyone is even AWARE of it , except particular circles of people and my other eye condition is super rare so they have it on the leap day so it only happens once every four years.

So she should be happy with the vast amount of attention that breast cancer gets.


In support of what you said - I had never heard of blindness awareness month. I actually went and Googled on it to see if you were pulling my leg. I mean, blindness is a major issue so it makes sense there is an awareness week or month but here we are half way through October and I've heard nothing except some breast cancer stuff.
Lady Leopardess's avatar

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David2074
Lady Leopardess
Yeah this is gonna seem harsh but October is also Blindness Awareness month and yet the Breast Cancer gets 98% of the attention.
She should be glad that it gets so much attention. I think Breast cancer gets the most attention probably out of all the cancers.
And to my specific eye condition , it gets a "month" but it doesn't mean anyone is even AWARE of it , except particular circles of people and my other eye condition is super rare so they have it on the leap day so it only happens once every four years.

So she should be happy with the vast amount of attention that breast cancer gets.


In support of what you said - I had never heard of blindness awareness month. I actually went and Googled on it to see if you were pulling my leg. I mean, blindness is a major issue so it makes sense there is an awareness week or month but here we are half way through October and I've heard nothing except some breast cancer stuff.
yeah , I mean at least gaia made a white cane last year or year before for it. ( It mentions it in the description , yay gaia! )
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In my opinion yes it sucks for those who cant be cured, but the for the others pinktober offers a great deal of support for those that could really need it. Dont get me wrong, I really do feel for the stage IV but everyone needs support.
Pessimist's avatar

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The Final Secret
In my opinion yes it sucks for those who cant be cured, but the for the others pinktober offers a great deal of support for those that could really need it. Dont get me wrong, I really do feel for the stage IV but everyone needs support.


What about the frillion other types of cancers? When are their super-special 'awareness' months for support? When's Brownuary for colorectal cancer? (Actually, dark blue is colon cancer, the month is in March. Yes, I'm a mostly-mature adult)

While breast cancer is the leading cancer in women, it's only one form of cancer. The other two biggies for women are lung cancer and colorectal cancer. Only neither of those two is 'fun' like breasts are, so as a society, we'd rather ignore them.

And that's not even mentioning the other frillion illnesses, like Lady Leopardess pointed out.
Ratttking's avatar

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Lady Leopardess
David2074
Lady Leopardess
Yeah this is gonna seem harsh but October is also Blindness Awareness month and yet the Breast Cancer gets 98% of the attention.
She should be glad that it gets so much attention. I think Breast cancer gets the most attention probably out of all the cancers.
And to my specific eye condition , it gets a "month" but it doesn't mean anyone is even AWARE of it , except particular circles of people and my other eye condition is super rare so they have it on the leap day so it only happens once every four years.

So she should be happy with the vast amount of attention that breast cancer gets.


In support of what you said - I had never heard of blindness awareness month. I actually went and Googled on it to see if you were pulling my leg. I mean, blindness is a major issue so it makes sense there is an awareness week or month but here we are half way through October and I've heard nothing except some breast cancer stuff.
yeah , I mean at least gaia made a white cane last year or year before for it. ( It mentions it in the description , yay gaia! )
Apparently White Cane Safety Day is today, October 15th. None in the MP, though.

Minor rant here: there is a question on the driver's permit test in my state about how to identify a blind person, the correct answer being they (often) carry a white cane with a red tip. I think if you fail that question, you should fail the entire test even if you get everything else right. My idiot brother-in-law had no clue - thankfully, he does not drive.
Lady Leopardess's avatar

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Ratttking
Lady Leopardess
David2074
Lady Leopardess
Yeah this is gonna seem harsh but October is also Blindness Awareness month and yet the Breast Cancer gets 98% of the attention.
She should be glad that it gets so much attention. I think Breast cancer gets the most attention probably out of all the cancers.
And to my specific eye condition , it gets a "month" but it doesn't mean anyone is even AWARE of it , except particular circles of people and my other eye condition is super rare so they have it on the leap day so it only happens once every four years.

So she should be happy with the vast amount of attention that breast cancer gets.


In support of what you said - I had never heard of blindness awareness month. I actually went and Googled on it to see if you were pulling my leg. I mean, blindness is a major issue so it makes sense there is an awareness week or month but here we are half way through October and I've heard nothing except some breast cancer stuff.
yeah , I mean at least gaia made a white cane last year or year before for it. ( It mentions it in the description , yay gaia! )
Apparently White Cane Safety Day is today, October 15th. None in the MP, though.

Minor rant here: there is a question on the driver's permit test in my state about how to identify a blind person, the correct answer being they (often) carry a white cane with a red tip. I think if you fail that question, you should fail the entire test even if you get everything else right. My idiot brother-in-law had no clue - thankfully, he does not drive.
You can buy it in one of the gold shops ^_^
yeah or the canes might be all white too, those are for people who are legally blind but don't depend on the cane as much.

I"m kind of surprised Gaia hasn't made cancer ribbons but I guess a person can always have one in their sig or dress all in that color.

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