Wednesday, October 2, 2013

Is It Time For A Self-Exam For The Breast Cancer Industry?

In honour of October aka breast cancer awareness month, a question for my survivor friends, if you don't mind my asking - and before you read on, please don't if reading about cancer will upset you or cause you stress. That is not my intention.

What do you all think about these kinds of videos, like the one below? I haven't personally experienced having cancer, thank God; I'm just a survivor of a non-survivor, so my perspective is probably different.

Personally, I hate them. I don't see the point. How is dancing around and wearing pink supposed to bring awareness? Or in this particular video, make the patient feel better? These videos seem to me to be self-serving, with the dual purpose of the participants having a great time, and feeling great because they believe they're contributing. Don't get me wrong - there's absolutely nothing wrong with that. Just don't pass it off as an awareness campaign (is there ANYONE who doesn't know about breast cancer at this point?). I resent the implication that if we would all just wear something pink and dance a flashmob, everything will be all better.

You want to do an awareness campaign? How about a campaign that lets people know that people STILL DIE from this disease?! The number of women who die every year from breast cancer, ovarian cancer and other cancers is unacceptable. The number of young women who leave behind children who have no understanding of what has happened to their mothers or fathers is deplorable. The number of families grieving their loss and struggling to carry on is offensive.

How about a campaign that forces companies like Susan G Komen to be completely transparent so we see how little of our donations is actually going to research for a cure*. How about a campaign to demand that our governments make finding affordable (dare I say free?) treatment a priority. How much money would the health care system save if we could just get a shot when that mammogram comes back showing a terrifying lump? How about we force those big-name pharmaceuticals to dedicate a set portion of their research towards certain diseases, in order to receive those government grants?

Do we need a month dedicated to breast cancer awareness? Really? Let's make October Breast Cancer PREVENTION Month. Or Breast Cancer Research Month. Or How To Do A Self-Exam Month. Or Stop Breast Cancer Month. I think we have enough awareness that there's something out there called breast cancer.**

The fact that so many people are shocked to hear of anyone dying from breast cancer ("You can still die from that?" and "I didn't know women still died from breast cancer" - actual quotes from someone upon hearing about my sister, z"l) means breast cancer research is not the priority it should be. No video with a bunch of people wearing pink gloves dancing to a catchy tune is going to change that.

*By Komen's own figures, about 21% of their total budget goes to research

** Edited to add: Male breast cancer could use an awareness campaign - Morey's family history includes his grandmother, two aunts and a great-uncle who died from breast cancer. A few years back, when Morey found a lump, he went to see his doctor, despite feeling embarrassed. He shared his feeling with the doctor, who reassured him saying Morey absolutely did the right thing, especially given his history. It turned out to be nothing, thank God, but in his case, it might not have been. (I have Morey's permission to share this story.) Men can, and do, also die from this disease. Thank you, Leah, and your cousin for reminding me that I needed to make that clearer.

In loving memory of Pamela;
the heartbreak will always be too great.

If you know of someone who is dealing with cancer, who has young children, this book, The Cancer That Wouldn't Go Away: A story for kids about metastatic cancer is a tremendous resource. Written and edited by two dear friends of mine who, with another sister, also lost a sister to cancer, it contains a guide by a child psychologist to help families talk to their children. May the day come that a book like this will no longer be needed.


Anonymous said...

Yes. Surprising as it is, there are still people who are unaware, or are aware but are lazy/scared/or any other excuse.

Your article (and the video too) is great in that it makes more people think about setting their yearly appointment.

Alissa said...

Thank you, Anon. I hope it also makes people think twice about where their donations are going, and to which companies they donate. I hope it also makes people think about doing self-exams, and talking to each other about self-exams.

Thanks for taking the time to comment.

Leah Eustace said...

Great post Alissa. Let's also remember the men. If there's any breast cancer awerness to be raised it's the fact that men can get breast cancer... and die from it (I lost a male cousin to it). All the pink makes me nuts.

Alissa said...

I should have specifically said men, Leah. I said "that people still die from this disease" to include men, but you're right - I should have been more clear. I didn't know about your cousin; I'm sorry for your loss, too. Male breast cancer could use an awareness campaign - you know Morey's family history; his uncle, grandmother, and two aunts died from breast cancer. When he found a lump, he went to the doctor saying he felt embarrassed. The doctor said he absolutely did the right thing, especially given his history. It turned out too be nothing, thank God, but in his case, it might not have been. (I have Morey's permission to share this story.)

Actually, I think I will edit the blog to add his story. Thanks, Leah.

Leah Eustace said...

My cousin (wife of male cousin who passed away) has started an awareness campaign. Check it's great!

nancy said...

Wonderfully written Alissa! Also true unfortunately. Our family history is ingrained in all of the cousins and children of cousins. We definitely take it seriously! I wish I could say the same for Maccabi Health services. I went for my yearly mamogram and I was told that a having grandmother and two aunts who died doesn't entitle me to have a yearly exam!! The intake clerk said "If you say it's your mother, you can get the mamography!!!

Evenewra said...

Yes, Alissa, as a survivor, I do have have complicated feelings with this kind of ad. I agree with what you've said about the ad seeming self-serving, creating a false sense of accomplishing something and so on.

I also agree that awareness means more education in addition to the dancing.

But I think for me the main feeling I can accurately describe is one of frustration at how little work goes into preventing overall poison from going into our environment and bodies. I don't know the research clearly enough, maybe no one does, but it seems to me that many cancers could be prevented not just from catching them early, but from mitigating toxins.

Now that's the practical objection I have to this kind of thing. The emotional one is a different one altogether and I'm not sure how to describe it.

For one, I think I'm irritated by the girliness of breast cancer campaigns. They clearly tried to get away from that here by throwing in some weird military imagery, but girliness makes it into a fun feel-good campaign. Well, as a lymphoma survivor, I guess my cancer was just a less feel-good one.

I wonder too about campaigns that don't seem to directly fix a problem. Letter writing and petitions seem more useful in some causes than paying money to go for a walk wearing pink. The money probably has a place too, but with any charity campaign, I understand more something where I can have a more direct result. Those opportunities are rare and also sometimes self-serving, but it seems like not everyone thinks through that, and I'm confused why not.

Finally, my cancer experience just didn't look like the one in the picture. It was scary and moody and haunting and very very personal. In this video there's a woman all alone in a hospital and some funky people entertaining her through a screen. How distant that feels. Isn't someone going to sit with her and maybe share a snack together with her?

I actually did have some friends raise money in my honor through the leukemia and lymphoma society. Yes, it was meaningful and it gave them something to do when they were worried about me and had no other options. I'm grateful for and non critical of that in any way.

I find a have a strange hangup that if someone asks me to donate money for cancer causes I'm very resistant. I hope no one emulates this me. In any other area, if someone asks for donations, I give what I can. But one time someone from a cancer organization called and caught me in a vulnerable moment. My gut spurred me to uncomfortable memories about my own experience and I asked her to call back at another time. Her response, "But Ma'am... they have CANCER," and she said it with this haunting voice like I was supposed to pay money as a talisman to protect me, and that these people I was helping were nothing but their disease. Honestly, my feeling was that whoever was calling me had never actually dealt with cancer head on.

Does that mean that money I would have sent wouldn't have been of value? Not at all. But I resented it deep down in my survivor gut and I sent the money elsewhere instead.

Hope that's not too bitter. I guess you and I have our own associations with our personal cancer experiences vs. that of large public campaigns. No campaign is going to meet us right where our experiences are and were, but there's a way in which I want to be left out of this scene.

Commenter Abbi said...

I always understood Breast Cancer Awareness to include all of the things you mention- prevention, research, self-exams, etc. And, obviously, if people don't know you can die from the disease, then it's clear they still need such a "month".

Unfortunately, as with most such "campaigns" the lowest common denominator usually wins out. The idea is to catch the attention of as many people as possible. What kind of video would reach more people- a montage of tombstones and emaciated cancer patients or people dancing in pink?

Maybe someone who sees the video will google breast cancer awareness and click on this site, which seems to have all the things you are demanding:

And frankly, I think many patients would appreciate giggling at doctors dancing in pink and knowing that someone cared enough about their disease to make the effort to make such a video. (But having never been a patient, this is just speculation).

You're obviously very angry, but I'm not sure how being angry at BAM will bring about the change you seek. I think drawing attention to the disease (especially if people think you can't die of it) is on balance a good thing. It's also good to encourage people to do some critical thinking about what it's all about, which is what you try to do here. It's probably good to keep in mind that everybody comes at this in different ways.

Alissa said...

Nancy, that's crazy. This is with a referral from your doctor, or no? My doctor (also Maccabi) just gives me a referral - I'm going to someplace in Jerusalem.

Have you had the BRCA test? I wonder if that would make a difference in allowing a regular exam.

Alissa said...

Evenewra, thank you. I was hoping for some insight from someone who can speak from experience.

The toxins in our environment is, in my mind, under the category of prevention: eating healthy and chemical-free foods, etc. It's something that needs promoting and education.

I get the walks and stuff. I worked with the March of Dimes long enough to understand that people feel the need to "earn" their money, and donors will give more for more effort. Before the Planned Parenthood insanity that made me do more research on Susan G Komen, I participated in the first Israel walk. The t-shirts, the celebrities, the rah-rah, the waste, the mess left by the after-party, all started my questioning. It was so different from the low-key March of Dimes walks. I can't help but feel that the money I raised for MoD went much much further than the equivalent amount I raised for Komen. What I raised wouldn't even come close to covering the costs of clean-up.

I can understand your resistance to donating to cancer causes. I'm impressed with your restraint in not responding to the caller with, "Yes. And so did I." I can't even read articles without responding emotionally, and I'm not a survivor. I can't imagine your having to receive a phone call without any preparation.

I've always appreciated your sharing your experiences with me, and I really appreciate it here. I know what my sister looked like in hospital, and while she was not alone like the woman in the video, she looked nothing like the woman in the video. She looked someone suffering the ravaging effects of cancer, and from the side-effects of the radiation and chemo, and it was not pretty. I feel like videos like this minimize the reality of cancer - whether it's breast cancer or lymphoma. It's just not pretty or fun or comfortable, and all I can think is someone will see this video and think, "See, it's not so bad - that woman looks fine."

Alissa said...

Commenter Abbi, thanks for commenting. Awareness, unfortunately, doesn't typically cover those things. It covers pamphlets. It covers self-promotion. If you see someone wearing a pink tie, does that teach you anything? If you see Danica Patrick driving her pink car, does that tell you that tens of thousands of people die every year from breast cancer? It's truly a nice thought that maybe someone will google breast cancer awareness; I hope someone will. But more effect campaigns that talk about prevention and resources will get *more* people to click.

And even the link you provided to NBCF, which is a highly-rated organization, takes you a page which has really nothing highlighted above the fold except "Breast Cancer Awareness Month" and two attractive women wearing pink. You have to scroll down and look for large breast cancer awareness-related buttons. There are links above, but that's not what your eye is first drawn to. Leave the attactive women in pink out of the picture, and bring those oh-so-important buttons up to where they should be - at eye level.

It's not necessary to have a montage of tombstones (and thank you for the sensitivity there) or emaciated cancer patients (here's an example of awareness - did you know many cancer patients are bloated and swollen, not emaciated?) in order to get people's attention. It's not necessary to have dancing pink gloves, either.

This is why I asked for input from survivors. And the feedback I have received (so far only Evenewra has openly responded) is that these videos are really not appreciated. My sister would have been annoyed at doctors dancing in pink. She knew her doctors and nurses cared about her disease by the actual care she received from them. She was moved by the people who called, sent letters, posted on the Facebook created for her.

I am very angry, but I'm not angry at breast cancer awareness month (is that what you meant by BAM?); I'm angry at an industry that thinks throwing a little pink at people assuages their collective conscience. I'm angry that organizations like Susan G Komen, who made breast cancer their business, let people think their donations are going to stop this disgusting disease, when it's actually mostly not. I'm angry at the lack of government support. I'm angry at finding out that a friend's brother, who has been actively researching for a cure for years, is in constant fear of losing his grant (his income which allows him to do the research) and has many colleagues who have given up fighting for research because they can't support their families. I'm angry at the beautification of breast cancer - how "pretty" everything is in pink. Breast cancer is UGLY. What it does to the person with it, what it does to their loved ones, what it does physically and emotionally.
I'm angry at companies that pinkify their products - a beer company created a pink beer, and they are graciously donating $1 of every beer sold. How much is that beer being sold for in the bars? $4, 5, 6? They are making their beer pink in order to sell their beer. You want to really help? Donate ALL the money made from selling one of your beer brands in the month of October. Just the profits, I'm not even talking net. Even half. Make it a big deal. Why make a pink beer?

Just drawing attention to breast cancer is not enough. Drawing attention to the TRUTH about breast cancer is what is needed. Cute videos are not going educate people about the number of people who die from breast and other cancers every year.

I appreciate your commenting and thank you for offering your perspective.

Deena said...

I'm sure you don't mind if I don't watch the stupid video you shared. I never got those campaigns where everyone has someone fun and then the end explains how it was all for a good cause. It boggles my mind and I feel like people are so used to it that they don't even notice that nothing really happened.

On the other hand, a video showing groups of women touching their own breasts (aka, doing self breast examinations) would be much more productive. Come to think of it, I'm serious. It would have a funny aspect to it but it would be about being tested (though my doctor told me self breast examinations aren't very useful).

Bottom line, I'm sorry for your pain. :( Thank you for sharing your thoughts and feelings on this.

Alissa said...

Deena, I'm copying my FB response here, if that's okay:

I don't mind at all. I would like to see a video that shows real women talking about how they discovered their cancer. Real women talking about self exams & mammograms. There is the video with the shirtless men - have you seen it? I'm curious how effective it is. It's a bit too jokey for me.

Despite what your doctor says (that's a convo for a keyboard, not from my phone), I personally know enough women who found cancerous lumps, who were successfully treated, due to self exams. Everyone should Learn how to do it properly & do it regularly; it's 5 minutes out of every month.

audung said...

It's not good that your friend died.

However, the Norwegian Cancer Society as used this musicvideo in ther collection campaign.
And they helped me when I had cancer. that they had a help phone I could call to get support and advice was one of the best thing for me.

And the flash MOB you are talking about there are actually doctors, nurses and students at the hospital that operated out my cancer tumor.
They get support from the Norwegian Cancer Society to conduct research on better ways to help people whit cancer.

The air station who was in the movie is where rescue helicopters for the area where I live is coming from, if I need to get to to the hospital fast.
why police and Fire department in Trondheim was with. Is because they suports the Norwegian Cancer Society in efforts to help against cancer.

audung said...
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audung said...
This comment has been removed by the author.
audung said...

The Norwegian Cancer Society also has this explanation how to do a self-exams.

But unfortunately, it's in Norwegian, so it gets a little hard for you to read.

They also have a youtube movie where they explain to the people of Norway on the help phone to the Norwegian Cancer Society

And just look at a small part of their campaign is and always will be wrong.

Alissa said...

audung, thank you for commenting. It was my sister who died - my friend, too, but so much more - and no, it's not good.

I'm glad the Norwegian Cancer Society helped you; you don't mention your results, but I hope you are now cancer-free.

My complaint is not at all with the Society, but specifically with videos like this. I have no doubt that there were real staff, and people who truly care, in the video. However, the video itself is not helpful for people who need information like how to do a self-exam or where to turn for help. The links you provided in your comments, are. At least for Norwegian speakers ;)

I will chalk it up to a native-language issue that you missed the points I make in my post. Thank you for taking the time to comment, and to post the links - even without English, the self-exam site is much more helpful than most I've seen.

Commenter Abbi said...

I think this post on a sociology blog I frequent might interest you:

Alissa said...

Commenter Abbi, thank you for sharing that link. The examples there (which are disgusting and infuriating), while with completely different intent, are along the lines of what I'm trying to get across in my post. Do Jingle Jugs really help, well, anything? (Now everyone's going to be clicking on your link: "Jingle Jugs? WHA'?" :) )

The business of breasts, indeed.

Alissa said...

Oh, and I was intrigued by the Yoplait story. I wonder what she means by "changed their practicies" - does that mean they stopped pinking their yogurt, or they stopped using milk from cows given recombinant bovine growth hormone? I hope it's the latter. That would be nice if they were truly concerned enough to change their formula.

Commenter Abbi said...

Don't mean to stalk you, but here's another one, on the same topic. From a survivor: