Take the Fright Out of Breast Cancer™

mrszinnz

They really aren't listening and its disgusting. Nothing in October is sacred anymore. I fully agree with your remarks Tammy!

mbcmermaid

I am not a fan of this. As it is, I vomit pink for an entire month. Why? Because cancer isn't fun. It isn't a pink party. And it isn't something to merge with Halloween. For those of us dying of MBC, the only breast cancer that kills, we get a constant barrage of pink ribbons shoved in our faces all month long. And we get very little to 0 research dollars. How about making people aware that 113 of us in the US die EVERY DAY from MBC? Our disease is exploited for the almighty dollar. Free the Ta Ta's day, for example. I'm sorry but has ANYONE ever seen a Save the Balls shirts for men with testicular cancer? My breasts don't matter. I do. I think you should be making people more aware of stage 4, which whether they like it or not, at least 30% of early stagers will end up metastatic. There is nothing you can do to prevent it. You say something about early detection...makes not one bit of difference. You're either going to become metastatic or you're not. If early detection stopped breast cancer deaths, then why is the death rate for it still exactly the same as 35 years ago? That proves it means nothing. I am not saying, don't have a mammogram, but that in no way prevents you from being stage 4. Most people believe we have stage 4 because we didn't "detect" it soon enough or didn't treat it correctly. This is 100% false. That isn't the way it works. Let people know the truth. So my hope is, you would bring this to light instead of a silly campaign. We ARE scared. We are the dying, who don't want to die. And we count on organizations like yours to help us. But no one wants to hear about the dying. Problem is, it's a harsh reality to the 6 people I know that have died from it in just 2 weeks. And to the rest of the 113 of us, each day. Here is your opportunity to help us. I hope you will. My friends and I may not HAVE. another Halloween.

Outfield

Mods,

Reading your response, these two things come to mind.

When I was diagnosed, I didn't want help with my "fears," I wanted help with my cancer. It's really belittling to make the problem with breast cancer "fear" rather than dying or living with side effects of treatment.

It's also simply dishonest to imply that better preparation and attention to current available screening should allay our fears.

Spookiesmom

I'm speechless at the mods tone deaf replies

Anonymous

Dear Everyone,

I just received a very kind and thoughtful response from the Mods. They ARE reading these posts.

I HATE Puketober so, so much. I was as angry as all of us have been over this stupid campaign the Mods have presented us with. I hate the name and all, but now I understand the reasoning behind it.

1. BCO is very much so sticking with their main objectives. As stated above, BCO exists to provide education, helpful links and to post news regarding developing/new treatments. The discussion boards exist to give members various forums to communicate, provide support and share knowledge.

2. Unfortunately, members rarely make donations to help keep the website up and running. We all have been been benefiting from BCO without supporting it. If each us who are able to do so donated, even if only a dollar or two, There would not be a need for BCO to seek outside sources for fund raising.

Think about it; the BCO folks are basically working for us for free. I know I feel like a mooch now.

BCO does have an online store to purchase items to benefit the site, It is not easy to find and most members are unaware of it. Look on the left sidebar of the Shop page to see all the items available..

Shop for Breastcancer.org

BCO is our family. We don' t always agree and that's okay.

The real fight is with the corporate vultures feeding off of our misery to fatten their bank accounts. I wish we could organize together to fight back and let our truths be known.

Traveltext

Who cares what the kids think as long as a few more dollars for awareness are raised.

I can hear the new products being churned out from half way around the world. Thanks to BCO, this year is going to be a bumper Pinktober.

Beatmon

I absolutely hate the Boob coming out of the ghost's mouth to scare away cancer! Wish that worked.

What I would like to see is how the money raised to going to be broken down and divided....will more be spent to put on the event than is actually put to good use

marijen

Looks like they've made a joke of it

PoseyGirl

ShepKitty,

Thank you for sharing what you've heard back from BCO. I would hope that they can publish their reply to you in this forum.

Referring back to a previous post I made (or two), I don't question that BCO needs the funds. I don't question the good work they do. I have hopefully never been aggressive in my past comments. I was hoping to be helpful.

It is the approach they are taking that I question; not that they are taking an approach. The marketing approach doesn't sit well and it sends out a message that flies in the face of the true fright that should and does exist. The website content in this campaign DOES fulfill what BCO stands for - education, awareness, support. But it's the packaging that is not appropriate, in my opinion. I feel it is a branding - NOT CONTENT - issue. I believe the branding should be changed to align with a) what BCO does (a Hallowe'en theme doesn't do anything to further what BCO does, so it should be up for debate absolutely. One has to be willing to reconsider their marketing approach), and b) which is progressive and sensitive to all that is going on with respect to proper bc education and the realities tied in. We can't really remove the fright - that's the bottom line. But we CAN acknowledge reality, and acknowledge what BCO does to understand that reality in a campaign branding.

I believe this new 'look' or branding fulfills (a) above, but NOT (b). I contend that both can be properly fulfilled in a well done campaign.

BCO, I'd really like to hear back from you on this, as I'm trying not to be attacking and belittling of your efforts. I understand what you're trying to do, but believe with every marketing instinct that it's off the shot, no matter how cute others outside of this organization find it. It's not really sending out the right message based on realities; any new breast cancer campaigns should leverage off the past and advance efforts, not freeze them or turn them back.

Please try to filter out the emotional aspects of the feedback you're getting and drill down to the bottom line questions:

a) Does our campaign reflect what we do?

b) Does our campaign stand out from the perspective of our 'buying' audience?

c) Does our campaign align with what current messaging around breast cancer should be? IN other words, does it send out an accurate reflection of what BC patients experience? Does it properly reflect breast cancer facts?

All three of the above must be met for a successful marketing campaign. Success is not just dollars in your pocket (which you might get from fulfilling a) and b) above. Success also alludes to the broader and very important directive of being responsible to the cause out there. You may have success in that income generated from this campaign will allow you to provide further features on this site which will absolutely benefit US. Agreed. But given what we're talking about here - cancer - there is a higher order directive which I believe must ethically be delivered based on the efforts made by many other organizations to accurately represent this disease. Proper representation of this disease experience is critical for continued support to drive toward cure.

Thanks so much for your attention to this issue (another small suggestion - it goes a long way for you to respond to people...radio silence is disappointing, even though we 'need' you and are not a paying audience).

Moderators

shepkitty, thank you very much for your thoughtful and helpful post.

LilacBlue and Traveltext, just so you are aware, the images you're posting and referencing are not BCO selected images, they are from fellow breast cancer survivors, and BCO users. Everyone expresses their feelings and finds motivation in their own way.

Outfield, we hope that the information on our site was able to help you with your cancer, as well as your fears, by understanding your diagnosis, and seeing that you are not alone.

mbcmermaid, we have a very thriving community of members with metastatic breast cancer Stage IV Forum and content that brings awareness and information about metastatic breast cancer. You may find this section helpful: Metastatic Breast Cancer. We are also preparing some new content for October 13th, Metastatic Breast Cancer Awareness Day, and have been asking for our members to share their thoughts here: https://community.breastcancer.org/forum/8/topics/858346?page=1#idx_1.

Beatmon, we're raising funds to continue providing community support and health information in addition to raising funds to help Breastcancer.org rebuild our site as a more personalized experience for you, our community members. Our goal is to bring together the community discussion forums and thousands of pages of medically-reviewed content into one seamless experience that helps you benefit from both the expert health content we create and the social support of your peers in our community. Maintaining and rebuilding the site is complex, time consuming and also costly. It requires extensive fundraising to make sure that Breastcancer.org is here for you.

Thank you for your ongoing, and honest feedback.

PoseyGirl

I will happily donate this week

VLH

I donated $5 to BCO several months ago. Already disabled and living on less than my income in the early 1990s, I haven't been able to work my part-time jobs for well over a year. This forum has been invaluable to me and I wanted to support it, even if it's in a small way due to budget constraints.

I don't love the Halloween theme. I do, however, recognize the challenges of fundraising. Our forum has a diverse and amazing group of participants. Perhaps someone has ideas for future fundraising that has broad appeal, but is more sensitive to the plight of those facing MBC? Maybe something along the lines of emphasizing the value of the organization, such as:

What would you pay to have access to a library of curated articles about breast cancer?

What would you pay to be able to speak with women and men who have shared your diagnosis and treatment?

What would you pay to know if a symptom you've been experiencing has been experienced by those in similar circumstances?

What would you pay to have a safe place to vent about your frustrations and fears without being judged?

What would you pay for suggestions on bras or compression garments or wigs or head covers or ...?

BCO needs the financial support of you and the people who love you. We've made it easy to demonstrate that you value the services the organization provides. [Insert payment link, etc.]

Just a thought...

Lyn

Sara536

No one is saying that we don't value all those things ! You are changing the subject. The objections are all about the current fundraising theme: Pink Halloween. Mods, Oh Please! The ends do not always justify the means. How does pink help men with breast cancer? Would they feel more comfortable if powder blue was added to the campaign? How does pink help women who have always puked at pink being identified as a women's color? Pink is for babies- cute, helpless, and not yet capable of mature,rational thought. How did it help that the radiologist was wearing a pink shirt and a pink tie, when he misdiagnosed my cancer? He documented something suspicious but did not see fit to biopsy. He retired and the next guy biopsied and compared with the previous record and wrote that it was obvious in the first. (He did not tell me this to my face but I get my actual records now.) Just covering his butt and protecting the first guy?

LilacBlue

Mods, I am aware the image I put up - the flyer clearly is not produced by BCO.

YES, if 'we' were self supporting though our own contributions, then fundraising would be a moot point. I just hit the donation button at the top of this page - for the first time, - using my Paypal account. A proactive way forward and as said previous, yup, I've taken and since I can, it's time I give back .

In my local area, I started (with another fitness instructor) a little grassroots charity, Pink Ribbon Pilates and the use of the term pink ribbon cuts right to the point. I donate my time and energy to create a once a week free Pilates mat class for anyone in treatment or completed, no matter how many years out. Four years of fundraising, through charitable donations from Rotary and Soroptimist to seed us at the start, and now, once a year fundraiser, our Wellbeing Day, has kept us going. We make just enough to pay a year of rent on the Boy Scout hall we hire and a few extras like new mats and blocks. Recently, we applied for a grant for the first time, from a well known cancer charity here in the UK and are awaiting a reply. Fundraising is exhausting, yet we don't need that much - ours is lean, tiny actually, in the big scheme of things and the women (stage I to IV) we serve are grateful we continue. That is what makes it all worthwhile.

Traveltext

Mods. Thanks for coming back.The images I posted were found with a quick Google search for "breast cancer Halloween". While they are not from BCO, they are nevertheless going to be out there once your campaign kicks off and will reverberate throughout social media. IMO,you are creating a monstor (pun intended) that will have a life of its own.

All of us here know what good work you do and we also appreciate what you do. But, according to Charity Navigator you had annual revenues of $122 million in 2015 and spent millions of dollars on admin. This is fine, but I don't believe we need to feel totally indebted to you or need to kick in for your website which is quite out of date and really not the place people are coming to like they used to due to the popularity of social media sites. For me, looking out for guys here and supporting my IBC cohort is just part of my voluntary contribution to help people with cancer. I'm a phone counsellor and an oncology ward visitor at my local hospital. I think you'll find many here doing similar things.

Anyway, I'm happy to disagree with management on this issue, and I'll stay unless you delete my account. But I still feel your new campaign needs calling out and have written an article for wider distribution here: http://pinktobersucks.com/trick-or-fright/

marijen

Thank you for for your article a the www.pinktobersucks.com site Traveltext, it's time to stop the insanity. I'm afraid they've gone too far, it will be hard to undo. Heads should roll.

I am sorry I told anyone I have BC. I think it will be very embarrassing and confusing for everone. A big joke for some.. people will make so many assumptions not knowing the spectrum of the disease. IMO

Sara536

This is The "1st Annual"Take the Fright Out of Halloween event. So I guess the plan is to repeat for years to come.

marijen

What's next, Christmas

Moderators

PoseyGirl, thank you for your thoughtful and well articulated post. We are taking it to heart and discussing. Also, thank you for your offer to donate. It is very appreciated.

VLH, also really great suggestions. Thank you.

LilacBlue- thank you! And we hope you receive that grant!

BosumBlues, thank you for expressing that Breastcancer.org has been a lifeline for you. We understand that you too disagree about this campaign, but appreciate you sharing your thoughts.

Sara536, we do understand your objections, and are very, very sorry to hear that the radiologist misdiagnosed your cancer.

We sincerely appreciate all the time you are all putting in to helping us figure out different approaches, as well as your donations (of any amount)!

Sara536

Marijen, I have not made my diagnosis public for some of the same reasons you are sorry that you did. I do not want pity or people pulling away from me. I don't want to go to a class that proclaims on the door that "All who enter here have cancer". I have been trying to talk myself out of this fear of the cancer label, but this BCO campaign is just making that label sillier and uglier and more confusing all at the same time. Kids are so impressionable, I feel sorry for them that they are being sujected to such a confusing and fearful introduction to cancer. Cancer patients are now in the same category as witches and ghosts and Frankenstein. We have always told kids who are scared of witches and ghosts and Frankenstein that these are just made up stories. Like cancer??

PoseyGirl

Just tried with two cards but was declined. I know that at least one of my cards is ok. I'll figure it out on my end and try again tomorrow!

Lita19901

I find the Moderators responses to be patronizing in the extreme. This tone-deaf campaign sounds like something a group of well meaning high school kids would come up with. It is alarmingly insensitive and offensive. I hope they have a really good time at their launch parties, get lots of praise and take bunches and bunches of selfies with important people

Lita19901

Perhaps the mods should approach Steve Mnuchin's wife to be honorary chair for this campaign - oh, wait! Maybe they already did

Lita19901

Would it not be more fitting to have a BC campaign slogan entitled "Be Afraid, Be Very Afraid" rather than "Take the Fright out of BC?"

The statistics for early stage BC are scary as h@ll. Why sugar coat it? Why not shout this from the rooftops to get people's attention and work on fundraising that way

nihahi

I am realistic enough to understand that bco needs funds to support its "purposes and goals".

I am cynical enough to question the amount of funds that are directed to "administration costs", as per charity navigator info.

I am ethical enough to believe that raising funds in a way that causes pain and distress to the same group that is supposed to be helped by the fundraising is just plain wrong. (Last I heard...PETA doesn't sell furcoats to help fund animal shelters, as an example of what I mean.)

Offensive fundraiser events/promos have been almost yearly occurrences...no amount of discussion, distress or outrage by bco members seems to change this.

marijen

I agree that there are drugs I need to save my life, but I know drug companies don't exist for charity.Many BC charities are supported by drug companies, as BCO is. But as a community, we are contributing by posting and sharing our experiences. We shouldn't have to feel guilty about accepting BCO services without charge, including forums for us to chat.

Tresjoli2

I wish you had just run a fundraising campaign on here with members. Just like PBS does once a year. Would have been so much better....

Traveltext

Well put marijen. I've gone through both pharmaceutical and financial toxicity to get where I am today. I also acknowledge that drug companies likely saved my life. And I couldn't agree more that we shouldn't have to feel guilty about accepting BCO's charitable services without charge.

Anonymous

Mari - Christmas would be much better! Much more publicity and hype than Halloween.

Naughty youngsters finding lumps of nasties in the cups of the brassieres that they had hung from the mantle with care...

And the carols to be sung!

( to the tune of Silver Bells)

" Chemo bells, chemo bells

It's my last time

in infusion.

Hearts will sing, my hands still wring

with fear I'll be back

here someday"

Darn it Mari..... I'll be up composing all night! Snarksters ought not to encourage each other

Tresjoli2 - I was just about to submit my comments when I saw your post. Your suggestion is by far the best! I've often wondered why there was not more of an effort to remind members of the need for donations to support this site. Bravo!

( we could still sing cancer carols, right?)

marijen

Maybe Frighty Halloween will bomb and forever be forgotten.

Shepkitty you are a poet and don't know it. Is that how it goes? How can I ever hear jingle bells again : )

Thx