MIND YOUR MANNERS ......

I am not a professional journalist.  I'm not a health care writer specializing in breast cancer.  I'm a woman who writes a blog.  I'm the irreverent one.  The blog was supposed to be a joke.  A means of laughing about my rearranged brain, if you will.  So what the heck happened?

I am now an advocate.  I am a volunteer at a cancer hospital.  I'm a breast cancer patient.  I'm a Ned-Bat.  After a discussion on Marie's blog, I've decided to ditch the word survivor in its entirety.  NedBat.  "No Evidence of Disease, Beyond Active Treatment" which technically isn't an accurate portrayal of my "status."  I'm still taking an aromitase inhibitor and I will continue to take those pills for another five years.  The need for daily medication doesn't exactly put me outside of active treatment.  Nonetheless, I'm a NedBat.

And, I call it like I see it.  I don't just make shit up as I go along.  If I don't know something, I will not just make something up to fill the air (or the page).  But, if something is wrong, and damn.... there is MUCH wrong with the pink ribbon culture, I'm going to be at the front of the line making noise.  Because I can.  Because I should.  Because others can't.

Last Thursday, I had the honor of representing Breast Cancer Action on WNYC which is the NYC National Public Radio station.  If you happen to be the one person out there who hasn't heard about my newly found "fame,"the interview can be heard here.  NPR wrote their own review of the movie in which they note, "the indignation seems justified on at least one point: that the pink ribbon movement thus far has done more for marketing than for medicine." 

I am a member of BCA and I am completely familiar with their mission.  The radio invitation was to promote our movie. Pink Ribbons Inc. opened in NYC on Friday.  It's playing through tomorrow.  For those who have had the opportunity to see the film, there are MANY topics discussed in the movie.  From my vantage point, Pink Ribbons Inc. is a means to opening up a conversation so that we may finally begin to CHANGE the conversation.  Yes, the film takes on much but for me, it boils down to those words...... "more for marketing than for medicine" and that is the primary take away message.  That is the message upon which, in my opinion, we must begin to focus.

With that in mind, I realize when one steps into a public forum, there will be opposing points of view.  I am always respectful of the views of others.  I'm mindful when I speak to others or comment on a topic to stay with the topic, not attack the person.  I suppose being on the other side of the radio, without the ability to participate in the discussion, some might get a bit reactive.  And in some cases, people don't take the time to use their words with care.  The result, they most certainly appear to be downright mean-spirited.

The comments below were coming in as we were on the air.  Fortunately, I wasn't able to see these comments although I doubt I would have hijacked Mr. Lopate's microphone.  I was a guest in "his house" and as I guest, I know how to mind my manners.  Others might do well to follow suit.

Listed below are the comments.  I highlighted those I found to be personally offensive.  In the framework of a thirty minute radio interview, it is simply not possible to dig deeply into some of the complex issues like the overall use of research funds.  That does not warrant someone to sit in judgement by calling our knowledge into question.  Yes, I scoff at awareness.  We've been aware for TOO long.  Years and years ago, the enormous sums of money we are STILL SPENDING ON awareness campaigns could have been dialed down in favor of better education and translating a much more significant portion of the pink funds into research labs.

This persistence in the comments that there have been treatment advances from people who should know better is mind boggling.  The treatment advances are minuscule in the scheme of the big picture.  Yes, the treatment is more personalized but the OPTIONS are the same.  Exactly the same in my case and my mom was infuriated to read how I am "dead wrong"  ......  I extend a personal invitation to anyone who is interested to come and do a side by side comparison of my mom's treatment records and my own treatment options and choices.  FOR me, I will repeat:  There has been no progress, just an IV pole.

The side effects are still horrible and the long term effects of the toxic drugs continue to plague me.  The nurses are in hazmat suits to protect themselves from the chemicals that will soon be coursing throughout our bodies.  Dead wrong?  I HOPE that opinion was coming from someone who knows about chemotherapy FIRST HAND and is not basing his ridiculous opinion on what he's reading in books.  It's one thing to intellectualize something like chemotherapy.  It's quite another to be hooked up to a machine watching these colorful poisons dripping into your veins.

And then, semantics.  Yes, cancer is the result of cells gone amok.  Mutants.  Got it.  The fact is most breast cancers will be diagnosed in women with NO family history.  The rest of the audience seemed to get that concept...... The purpose of much of what was discussed was to raise the right kind of awareness. To begin meaningful dialogue.  To change the course of this disease.  Looking at metastatic cells in a lab is important work.  Most important?  Finding a way to stop the deaths of the women in whose bodies those metastatic cells are wreaking havoc.   Quite simply, nothing has changed.  At All.  And That Is WRONG.  That's not progress.  That's death.

Here are the comments.... with a very special thanks to Mary from Fort Greene for jumping in......  And, my own comment on the NPR site thanking everyone for their participation is at the very bottom of this post.


Karen from Bernardsville, NJ

Thanks for mentioning the excessive (and self-congratulatory) use of the term "survivor" by the pink-ribbon culture and the exclusion of stage-4 victims. The general tenor of the breast-cancer discussion often implies that those whose breast cancer was cured managed to overcome the disease because they were stronger than those whose cancer proved fatal.

Knowing you are dying of cancer is devastating enough without the additional heartache of being dismissed as somehow inferior, outside of the greater community of strong, hopeful women.

My own breast cancer was cured. I was lucky...not heroic.

May. 31 2012 01:07 PM

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Helen from Holliswood, NY

As a hypnotist, I have always refused to wear, or even look at a pink ribbon. The pink ribbon says BREAST CANCER.

The unconscious mind, (right brain), does not analyze. That is what the left brain, the analytical brain does.
So, in seeing the pink ribbon, whether wearing it or seeing it displayed, the image goes directly to the right brain... one's unconscious is getting the message"Breast cancer, breast cancer" . It is being programmed , conditioned, if you will.....

Whether it's breast cancer or any other conditioning,positive or negative, life lives up to what you expect of it. The pink ribbon is a visual suggestion for breast cancer.

So glad for the opportunity to voice my strong objections to the pink ribbon.

May. 31 2012 01:02 PM

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Lia from New Jersey

I have never been so disappointed in a Leonard Lopate interview. Usually incisive, and well-prepared, he seems to have been completely swayed by the filmmaker's point of view, so much so that he has lazily gone beyond the scope of their knowledge, and swerved into a discussion of the efficacy of cancer research altogether. Further, he failed to challenge ANY of the statements they made, some of which were outrageous if not, at the very least, outside the main stream.

This is an exceedingly complex issue, and while there are legitimate questions to be raised about the "pink ribbon" campaigns, particularly as they relate to how much money from any one product is actually going to research, the interviewees are neither knowledgeable enough nor objective enough to discuss the overall use of research funds in this country. I have many problems with the Komen Foundation, and an examination of their partnerships is not unwarranted, but to suggest that because the Komen Foundation has chosen to focus on a "cure"-- as opposed to education or other aspects of the multi-faceted battle that we need to wage, is absurd.
As a breast cancer patient, and as a long-term medical resarch fundraiser (not for Komen) I urge you to invite a breast cancer researcher and a medical oncologist onto the show to discuss just how much money is needed, how screening, treatment and prevention have indeed changed over the last twenty years, and how "awareness" which your guests seem to scoff at, has saved lives. Medical research is expensive, complex and lengthy. At the very least, please refrain from asking leading questions to your interview subjects about issues they have no knowledge of. And start challenging them-- challenge ALL your guests, that is why I listen to you!

May. 31 2012 12:56 PM

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Mary from Fort Greene

I find the pushback from Mike from Inwood and Paul from New York condescending and reactionary and sadly missing the point the women were making. They completely missed what they were upset about regarding Komen, and to try to trump them by saying "I'm looking at cancer cells right now" is an attempt to minimize their extremely valuable, important points. I suggest a closer listen, men.
I can't wait to see the film!

May. 31 2012 12:51 PM

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Opal S. from NYC

I am a 16 year survivor of breast cancer, caught in time and had a lumpectomy. Breast cancer is in my family, my mosther and my sister had breat cancer. My only treatment was radiation. I had a friend who had a mastectomy who was give chemotherapy which caused leukemia-the doctors admitted to this.
I don't know the answers and this disease is horrible. But I figured out what caused mine and changed my diet. I now eat organic even though I don't have much money. I use flax seed everyday. Drinking green tea and eating dried shitake mushrooms are said to be preventatives. So far it's worked for me.

When women discover they have the disease in the family I hope they make some changes in their diet. 

May. 31 2012 12:48 PM

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Jackie Goodrich from Brooklyn

In addition to the presence of chemicals in the wider environment (air, water, soil), I wonder if there is a link between pesticides used in home yards and gardens and the incidence of breast, and other, cancers.
From "This Old House" web site:
"Did you know that homeowners use 10 times more pesticides per acre on their lawns than farmers use on their crops? Well, that's what the U.S. Fish and Wildlife Service says. Heavy doses of pesticides, as well as fertilizers, herbicides, and other lawn chemicals are associated with everything from breathing problems to certain types of cancers in humans (not to mention in dogs and cats)." 

May. 31 2012 12:46 PM

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Phoebe

There is often a religious component to the "positive attitude" message. My mother, who has been through cancer three times now, is sometimes told by (well-meaning?) family members and friends that she needs to pray more. She is told stories about So-and-so who prayed really hard and therefore overcame cancer. It's pretty offensive.

May. 31 2012 12:39 PM

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Margot Mifflin

An interesting consumer consequence of the pink ribbon: I'm a journalist/author who writes about women's tattoo art. Last week I interviewed a well-known artist, Mary Jane Haake, who told me the single biggest regret tattoo she sees is the pink ribbon, which she's asked to coverup. Women get it when they have cancer, then want to get rid of it when/if they're cured. They don't want to be reminded of their illness, and they don't want to identify as "survivors".

May. 31 2012 12:38 PM

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Paula from jersey

This topic is quite signficant to me. Tomorrow marks the 5th anniversary of my mother's passing from breast cancer. I can't agree more about the pink ribbon issue; it was with my own research that I advocated for myself to be tested for the gene which now, supposedly, makes me 80% more likely to develop the disease. My aunt and I are advocating locally for prevention and to spread information to give women the power to ask for these tests when they have had a significant family history. Personally, pink has done nothing to make me aware of anything to prevent the disease. I hope more women like yourselves will advocate on behalf of all of us. Thank you.

May. 31 2012 12:34 PM

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Paul from New York, NY

When this lady says that breast cancer is only 10% genetic she should stipulate that she means familial in that an increased risk is passed down by the parents. She failed completely to mention that 100% of breast cancer is genetic in nature by somatic mutation.

May. 31 2012 12:33 PM

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Paul from New York, NY

I am currently sitting in a cancer laboratory on the Upper East Side looking at metastatic breast cancer cells under a microscope while cringing at every comment regarding the molecular genetics or biology of breast cancer made by the women on this segment. Tell them to go get a PhD or MD and read the literature carefully before saying that "too much" is going towards research.

This kind of mentality is dangerous. There are many other issues in society to fight against, maybe we should leave breast cancer awareness alone?

May. 31 2012 12:29 PM

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Anne Mendelson from North Bergen, NJ

Several years ago my gynecologist, a lovely young woman in her thirties, died of breast cancer. I lost count of the number of people who, when I mentioned this to them, instantly jumped to the conclusion that somehow she'd done something wrong, like neglecting to take care of herself. It speaks volumes about blame-the-victim attitudes toward this illness.

May. 31 2012 12:28 PM

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Mike from Inwood

One of the woman claims that current research is often duplicated. True! Blame the health care system, not Susan G. Komen. If the race to find a better treatment did hold the promise of riches, science would be done more in the public eye. Please direct your efforts to getting single-payer health care.

May. 31 2012 12:28 PM

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Mike from Inwood

The woman who stated that she received the same quality of care in 2006 that her mother received in 1986 is dead wrong. Sure, the methods might still be radiation and chemotherapy, but the chemotherapy is worlds apart. It is no longer one-size-fits-all and highly individualized. The radiation is more accurately focused allowing the doses to be far lower to achieve the ssame effect.

May. 31 2012 12:24 PM

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NABNYC from SoCal

I have serious questions about the disease charities in this country, particularly regarding the money they claim goes to "research." Let's say a charity gives $5.0 million to some university to do research, and the university discovers a cure for baldness, another weight-loss pill, or something to relieve indigestion (as opposed to people just cleaning up their diets). Doesn't the university then sell the research results to the Drug Corporations which, in turn, manufacture (in India) and sell the drugs to Americans at an obscene price? Why isn't the result of the research public property? Why should we pay for research which just goes to further enrich the drug industry?

Beyond that, I agree that the cause of breast (and other) cancer is rarely discussed. Did I miss something, or was there a major class action lawsuit against the doctors and Drug Corporations that pushed women to start taking hormones at 40, promising a fountain of youth but instead contributing to a radical increase in breast cancer? It's like the murder of millions of women is treated as something of no consequence -- let's not talk about that.

What about women who receive massive hormones in an effort to get pregnant? How many of them get breast cancer as a direct result? Why so little interest in drugs which kill people? We obsess on heroin and even something as stupid as marijuana, but when we find a proven legal drug which kills us, there are no consequences. Except for the dead women.

May. 31 2012 12:16 PM

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GP

Thank you for this segment! I cannot wait to see the film.

May. 31 2012 12:16 PM

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Dan from Bronx

I was in a deli this morning in the Bronx and saw a sign from a deli meat company that said a % of sales would go to Susan G. Komen and breast cancer research. In the picture they had shaped the bacon strips into the breast cancer ribbon symbol.

May. 31 2012 12:13 PM

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AnneMarie Ciccarella

Thank you all for your passionate points of view on yesterday's interview. All points are well taken. I would like an opportunity to clarify some of the things that may not have been adequately explained.

I am a breast cancer patient, presently NED. I do not think nearly enough funds being raised as a result of the ribbon are going toward RESEARCH. I am disturbed that there have been little (no) advances in the treatment of metastatic breast cancer. I applaud Paul's research. I lost three YOUNG friends within days of each other earlier this year (two on the same day). I am resentful of the money that is being used to "raise awareness" for one simple reason. I'm fairly certain we are all aware of the importance of early detection. Those who CHOOSE not to have a mammo are making a choice for themselves. We continue to fund this "awareness" for those who MAY have breast cancer in such disproportionate sums when people are DYING of this disease (globally one every 68 seconds). They are pleading with us to fund MEANINGFUL RESEARCH in the hopes this research will catch up before they die. They Matter Most.

Only 10% of breast cancers are attributable to a known genetic mutation. The point in that: the greatest risk factor for a breast cancer diagnosis is being a woman and getting older. Many diagnosed have no known factors, no family link. I have a strong family link and no identifiable genetic mutation. That science is in its infancy and as that progresses, I'm sure things will change.

The standard of care I received WAS identical to my mom's. I had the same treatment options. Lumpectomy or mastectomy. When I chose mastectomy, I did not have to endure radiation. Chemotherapy? Two of the drugs in my cocktail of three drugs were identical to my mom's. They have not figured out how to combat the side effects. Tamoxifen? Just had a friend diagnosed with uterine cancer. No advances there either. It's meaningful progress I'm looking for...There was a recent study on the 20yr effect of "CMF" on those of us who suffer from cognitive issues. It's real.

I think the bottom line here is this.... the film touches on a maelstrom of topics and it would take HOURS to have a truly meaningful discussion on any one aspect of the film. The research, imo, has been stalled by the illusion of progress we are being sold as a result of the pink ribbon. I have a daughter. I don't want her looking over her shoulder. We should be demanding full transparency and total accountability from anyone who is asking for a donation (not just breast cancer but the pink ribbon seems to "sell best") ... We should know how much of our money is being donated. Is there a cap? Where are they sending the money? What is THAT organization doing with the $?

We've raised BILLIONS of dollars. We no longer need to be "aware" We need to demand ACTION.

Thanks again for taking the time to share your thoughts on the interview.

AnneMarie Ciccarella