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Topic: Take the Fright Out of Breast Cancer™

Forum: Walks, Runs and Fundraising Events for Breastcancer.org —

Discuss and share pictures of the walks, runs or fundraising events for Breastcancer.org. Visit also our Fundraising Forum for suggestions.

Posted on: Sep 5, 2017 12:24PM - edited Sep 22, 2017 01:10PM by Moderators

Moderators wrote:

Hello Community!

We started this education and fundraising campaign to address fear as one of the many barriers that may keep people from getting the best care possible. We know we can never remove all of the fears around breast cancer. We know everyone responds to and lives with fear differently. Our goal is to motivate people to courageously and confidently make informed health and life decisions.

GET INVOLVED

Share the facts about breast cancer and breast health found in our toolkit.
Host a fundraising event (make it a Halloween party if you think that will help your friends and loved ones get involved).
Contribute your stories of addressing your own fears of breast cancer (just as no two cancers are alike, there is no one way through it).
Support each other by joining our growing community.

BREASTCANCER.ORG'S MISSION

Breastcancer.org is a nonprofit organization dedicated to informing and empowering people to protect their breast health and overcome the challenges of breast cancer. For more than 18 years, we have provided expert medical information to millions to help reduce the fears and anxieties associated with a diagnosis by providing the most reliable, complete, and up-to-date information about breast cancer, as well as hosting the largest and most active online breast cancer peer community.

YOUR DONATION'S IMPACT

Your support funds Breastcancer.org's educational and support programs. In a moment when many feel overwhelmed by their diagnosis and the critical decisions they have to make about their care, Breastcancer.org is there to answer their most pressing questions about breast cancer and connect them to a supportive peer community when they need it.

To quote Jackie, a Breastcancer.org Community member:

"Whenever I would have a new symptom or a question would pop into my mind, I could always find the answer on Breastcancer.org."

Your generous support is vital because it helps us deliver on our mission. Every gift counts. Give today in support of the millions who rely and depend on Breastcancer.org, not just this October, but every day.

Thank you!

To send a Private Message to the Mods: community.breastcancer.org/mem...

Page 5 of 18 (538 results)

Posts 121 - 150 (538 total)

Sep 16, 2017 08:28PM Meow13 wrote:

I hate the awareness campaign and it isn't just a few of us.

https://www.washingtonpost.com/posteverything/wp/2...

Get rid of it. I remember people at work putting up save the ta ta signs in our exercise locker room. People were shocked that I got BC, they said but you found so early. The big kicker was "what you have to have a mastectomy and maybe chemo" but it was so early. The pink fun didn't sound so fun then. Everyone knew I was in excellent health and one of the few that was religious about exercise and eating healthy. I am glad it was early but feel people don't know self checks and mammograms can be worthless on dense breast tissue.

Money needs to go to research. The drugs are inadequate today, I feel almost barbaric. Let's find a cure that doesn't destroy QOL.

Sometimes I wonder if I got BC so I would use my powers to fight for what we really need.

Sep 16, 2017 08:30PM shepkitty wrote:

Oh yes Mari! Those awful sports bras that are way tooo tight and squish and contort the flesh in painful awkward ways... and make it look you have breasts on your back or like you are smuggling lumpy mashed potatoes... or both!



"Keep passing open windows" Dx 2/2013 Stage IV mets to bones/spine, IDC, Left, 1cm, Grade 3, ER+/PR-, HER2-. Dx 1/23/2017 brain mets. Bone Rads, 2 Kyphoplasty, 1 Craniotomy, 3 Gamma Knife. Xeloda May 2017. DX 11/7/17 DCIS,Left, Ibrance 6/18

Sep 16, 2017 08:40PM marijen wrote:

Did you go watch the videos of the people in charge? Click the link at the top. I guess I will have to boycott Nordstroms, one of the sponsors. But I love their free shipping.

Sep 16, 2017 08:41PM - edited Sep 16, 2017 08:46PM by Sara536

Shepkitty, I never thought for a minute that BCO produced that shirt. My point is that by starting a campaign connecting breast cancer to Halloween and fright, they opened an ugly can of worms. It immediately shocked many of us that they didn't have the forsight to see where that would lead. When the contributers to this thread tried to warn them, they became very defensive, apparently because they truly didn't get it, or the dollar signs in their eyeballs blinded them.

Sep 16, 2017 08:42PM - edited Sep 16, 2017 08:43PM by Meow13

shepkitty, I don't believe the people buying the stuff are to blame. All my coworkers that organised the fundraisers and really believed if you just find BC early you wont have to worry or be scared. Until I got it, someone who did everything "right" got it and they saw what I went through they started to see things differently.

BCO is to blame, it is about money, they don't care about what survivor's think or want to see. The marketing is huge and they ARE a part of it. Now they are trying to get courageous stage 4 stories.

Drug companies want to push these dangerous drugs on us to offer some hope to us. I am grateful to some that allowed some of my friends and relatives to live longer but we want QOL.

Ridiculous to still push awareness so heavily.

Sep 16, 2017 08:48PM nihahi wrote:

"Breasts of Death"...pretty much sums up the danger and insensitivity of connecting a breast cancer fundraiser with Halloween.

The mods say that the tie-in is to remove the fear factor. RUBBISH! The consequence is making a mockery and a laugh out of a disease that causes pain and distress to millions.

"Comparison is the thief of joy" Dx 10/1991, IDC, 2cm, Stage II, 0/7 nodes, ER+/PR- Surgery 11/6/1991 Mastectomy: Right Chemotherapy 11/28/1991 Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex) Hormonal Therapy 5/30/1992 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/6/1992 Reconstruction (right) Surgery 5/6/1997 Reconstruction (right) Surgery 4/11/2013 Reconstruction (right): Free TRAM flap Surgery 1/7/2014 Reconstruction (right) Surgery 4/13/2014 Reconstruction (right): Nipple reconstruction

Sep 16, 2017 10:36PM marijen wrote:

Shepkitty there are no real Halloween songs. Maybe Monster Mash or Witchy Woman? See what you can do.

G

Sep 16, 2017 11:04PM - edited Sep 16, 2017 11:06PM by shepkitty

Hmmm....The Mammo Mash?

I'll write it and then we can wear the Breasts of Death shirts and make a viral video!

"Keep passing open windows" Dx 2/2013 Stage IV mets to bones/spine, IDC, Left, 1cm, Grade 3, ER+/PR-, HER2-. Dx 1/23/2017 brain mets. Bone Rads, 2 Kyphoplasty, 1 Craniotomy, 3 Gamma Knife. Xeloda May 2017. DX 11/7/17 DCIS,Left, Ibrance 6/18

Sep 16, 2017 11:08PM marijen wrote:

We should probably have a skeleton mask, and one of those cute head scarfs- red

Sep 17, 2017 02:24AM - edited Sep 17, 2017 02:34AM by shepkitty

I still have an awesome skeleton mask of my son's somewhere. I think it even glows in the dark! I like the head scarf idea but I think the color red is used to designate a group of hemophiliacs. We are all crippled by this horrid disease - maybe the disabled group that uses the color blue wouldn't mind us using it too?

Still working on the Mammo Mash.... I actually got to see Bobby Pickett perform his Monster Mash in the late 80's in Boston. He put on a great show and seemed to really be enjoying himself. Sadly, he passed away from leukemia in 2007.

Just looked up the leukemia ribbon - it's orange! This is really getting mucked up. Why isn't October leukemia month? Do you think those folks are mad about the pink crud too? Us BC people don't want the pinktober. Maybe we can just give the whole dang "celebration" to them? Who would we call?

Mari - we should probably wear orange head scarves in our video so as not to offend.



"Keep passing open windows" Dx 2/2013 Stage IV mets to bones/spine, IDC, Left, 1cm, Grade 3, ER+/PR-, HER2-. Dx 1/23/2017 brain mets. Bone Rads, 2 Kyphoplasty, 1 Craniotomy, 3 Gamma Knife. Xeloda May 2017. DX 11/7/17 DCIS,Left, Ibrance 6/18

Sep 17, 2017 03:11AM marijen wrote:

Nothing like a good laugh in the middle of the night! Ok, orange it is, I'm flexible. You're on your way to stardom shepkitty. Maybe they'll sing your songs at the next CMA awards. We should put boots on those skeletons. They can do a line dance.

Sep 17, 2017 05:26AM gb2115 wrote:

Lol, "be afraid, be very afraid." So true.

I think bc awareness month should be done away with because everyone is aware, to the point where the general public seems to believe bc is no big deal, where in reality even an early stage diagnosis is nothing short of devastating. People think my bc is no big deal because I didn't get a mastectomy--there is no concept of the personal hell we all go through, which early detection doesn't prevent.

Instead there should be fundraising for "wire localization awareness" because there has to be a better way. That was the worst moment of my life to date. Sorry, but fundraising needs to go to better anesthesia for things like that... making sedation available if needed. You're going to knock me out to surgery anyway, why did I have to be awake for that, having a giant painful hematoma put into a mammogram before getting the lidocaine. How about making mammograms with surgical/radiation scar tissue less painful. You know if this were about testicles...things would be very different. If we can't figure out what causes the cancer, which hinders prevention, how about focusing on quality of life for those diagnosed.

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.6 cm ER/PR+, Her2 -. Gr 2. 2/2 nodes positive. AC/T. Age 42

Sep 17, 2017 05:41AM - edited Sep 17, 2017 05:42AM by Moderators

HoneyBadger, and others, have brought up some good, concrete suggestions.

We clearly hear that everyone here in the topic does not like this funding campaign.

Because this campaign is far along, and was tested on a number of community members prior to launch, it is unrealistic, and not possible to completely get rid of it. Yes, we are having an event, and yes, we need to fundraise. We have a very large project underway to redesign the site to make it better for us all.

That said, we'd like to hear constructive tweaks to the language, and are open to hearing your opinions on suggestions below. Please do try to help us here.

What do others think?

From HoneyBadger:

"Show The Fright of Cancer" or "The Fight and the Fright of BC."

Include the stories that stage IV members so graciously share when BCO asks for them. Show day-to-day struggles and the true grit it takes. Show ALL stages. EDUCATE on the importance of screening AND on the fact that there is no cure. Show how this site offers support to all stages. Give them all a voice. Wouldn't this help not hurt donations?

For me, the message is more that being afraid of BC does not prevent cancer from happening to you. Ignoring symptoms does not cure it and may decrease your options for treatment

The current branding is more like FEMA putting on an event for hurricane Harvey and Irm victims and saying "Flooding can be bad. Make sure you have flood insurance. For any of you that didn't have insurance or have been impacted impacted, piss off. You don't matter."

What do others think of the idea of (from another member)

"Let's Scare Breast Cancer"

  • by showing it we have no fear
  • by donating to research to combat this disease
  • by supporting our brothers and sisters fighting with us
  • by empowering others to get tested, know the facts, reduce their risk

and so on...


    To send a Private Message to the Mods: community.breastcancer.org/mem...

    Sep 17, 2017 06:35AM badger wrote:

    hi, IMHO if you want to take the fright out of breast cancer, find a cure.

    Hold the event on National MBC Awareness Day with all proceeds to research.

    Metastatic breast cancer is what kills. All of us are at risk for the rest of our lives.

    I've lost too many friends to MBC and won't breathe easy until we find a cure.

    Find your calm. Move forward from this place. Dx 12/22/2009, IDC, 2cm, Stage IIB, Grade 1, 1/4 nodes, ER+/PR+, HER2-

    Sep 17, 2017 06:51AM Suburbs wrote:

    While admirable the organization is listening to suggestions to make the fundraising messages more palatable, it would be difficult to imagine any suggestion that would be appropriate for a gathering of people dressed in costume drinking and dancing taking the fright out of breast cancer. The entire concept is completely ludicrous. It's really too ridiculous to imagine.

    Have your fun night.



    Dx 1/9/2017, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 1/31/2017 Herceptin (trastuzumab) Chemotherapy 2/1/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 6/20/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/21/2017 Arimidex (anastrozole) Targeted Therapy 2/1/2018 Nerlynx

    Sep 17, 2017 07:20AM badger wrote:

    Suburbs, agree it is reminiscent of Prince Prospero's masquerade ball in "The Masque of the Red Death" by Edgar Allen Poe.

    I just donated to BCO. Thanks Mods, members, and all behind the scenes of this site.

    Find your calm. Move forward from this place. Dx 12/22/2009, IDC, 2cm, Stage IIB, Grade 1, 1/4 nodes, ER+/PR+, HER2-

    Sep 17, 2017 07:35AM MelissaDallas wrote:

    Why is it a surprise that this is going over like a lead balloon when there are literally thousands of threads and posts here in the discussion boards over our members disdain and despair about "Pink (Fock) October?"


    LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes

    Sep 17, 2017 08:01AM marijen wrote:

    How does BCO plan to redesign the site to make it better? And why is it such a very large project? It sounds like the Obamacare computer exchange system that ended up costing billions. Shouldn't that money be spent on research? What will happen to our privacy which is not so great to begin with. Will our information be tracked by the government? Will they attempt to connect it to our medical records and insurance companies? Will it be used for research? Will it be fed directly to outside sources? We need to know.

    What is the need for a very large project to redesign the BCO site?

    __________________________________________________________

    Moderators said:

    We clearly hear that everyone here in the topic does not like this funding campaign.

    Because this campaign is far along, and was tested on a number of community members prior to launch, it is unrealistic, and not possible to completely get rid of it. Yes, we are having an event, and yes, we need to fundraise. We have a very large project underway to redesign the site to make it better for us all.

    Sep 17, 2017 08:10AM nihahi wrote:

    Good point, MelissaDallas!

    Mods, I for one would LOVE to see what you presented and what the feedback was from this "community member sampling" you say you did. Could you please share how you selected the sample group?

    You keep saying how you are improving things to better support us...how is this campaign any different from your support of past campaigns like "Baubles for Boobs"? YUP, I remember that one too! Every year, you tune out the many voices that beg you to stop with the cutesy party themes and tell it like it is? Why???

    "Comparison is the thief of joy" Dx 10/1991, IDC, 2cm, Stage II, 0/7 nodes, ER+/PR- Surgery 11/6/1991 Mastectomy: Right Chemotherapy 11/28/1991 Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex) Hormonal Therapy 5/30/1992 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/6/1992 Reconstruction (right) Surgery 5/6/1997 Reconstruction (right) Surgery 4/11/2013 Reconstruction (right): Free TRAM flap Surgery 1/7/2014 Reconstruction (right) Surgery 4/13/2014 Reconstruction (right): Nipple reconstruction

    Sep 17, 2017 08:41AM - edited Sep 17, 2017 08:42AM by Outfield

    How about:

    - a ghoul with a caption "Don't trust a mammogram to save you from it"

    - a disintegrating pink ribbon and a caption "more than 40,000 deaths a year, you SHOULD be scared"

    Sorry, I just find the whole idea too offensive. No matter what you do, it ties a horrible disease to a fun Holiday.

    I understand you're not going to cancel this year's events. But do you have to keep milking this TM of yours?

    When I donate, which will be when I go back to work full-time, it will be in the names of my two good friends who have died. My two wonderful, funny friends who were the life of any party. My young friend and my older friend. My friend who died at home, and my friend who died in the hospital. My friend who left parents, and my friend who left a partner. My friend who was too young for a mammogram by any organization's recommendations, and my friend who worked in medicine and had them regularly.

    You may be fundraising, but you are also abusing your position as an organization with some credibility to paint a picture of this disease as something trivial, something that can be "caught early" if women would just do the right thing and listen to the radiology organizations, something that won't happen to you if you take care of yourself.

    Edited to add: I echo Marjen's question. Why do you need money to redesign this site? What are your goals there?

    Sep 17, 2017 08:43AM - edited Sep 17, 2017 10:18AM by Moderators

    badger, thank you for your donation! We sincerely appreciate it, and your feedback.

    While we understand how critical research is, and are huge advocates of organizations like The Breast Cancer Research Foundation (https://www.bcrf.org), for example, we need funds to support the creation of our medically-reviewed content and peer-to-peer support forums, all programs designed to help guide and support you along your paths from diagnosis, through treatments and beyond.

    marijen and Outfield, Breastcancer.org has started an ongoing project to redesign our entire site, step for step. 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 the community. We are rebuilding our technology platform so we can offer each of you a more individual experience; helping to guide you wherever you are in your breast cancer experience.

    Why are we rebuilding?

    Our community discussion forums and our "main site" are very separate, and the flow between the two areas is awkward and under-utilized. Feedback from you has told us that we can do more to help you benefit from the content we create on our main site. We have also heard that those who rely on our content are not always aware that we have a vibrant online community for support. This needs to change. We know that accurate health information AND learning from peer experiences are necessary to making the best decisions for your care.

    We also know we can make the overall user experience better and plan to start adding many of the features you've been requesting over time. The new Breastcancer.org will have a more up-to-date feel to it, making it easier for you to find what you need when you need it.

    nihahi, We had posted an ask in the Announcements and in Moderator messages (see below) to ask for help. We sent all the materials to 13 members who had responded. As for "Baubles for Boobs", that was funding campaign started by a user and supporter of Breastcancer.org. We helped to advertise the campaign. It was not a Breastcancer.org named or led campaign.That said, we were very grateful to their efforts, and support.

    (This was our post for feedback:

    Announcements: Breastcancer.org is launching a new fundraising and awareness campaign this fall and we would like your feedback. If you would like to participate, please PM us your email address! We will then email it to you this Friday. Thank you!)

    To send a Private Message to the Mods: community.breastcancer.org/mem...

    Sep 17, 2017 08:44AM - edited Sep 17, 2017 09:03AM by Tara17

    hi ..I appreciate that it takes some resources to run a website . What makes this website an amazing source of support is the powerful personal testimonies of the men and women who have walked this path, sharing their stories and encouraging us. Without these men and women and their families affected by BC creating the community, this website would not exist. The mods do not create the community, it's the people here who have done so. The articles on BCO are so-so, they didn't help my research, the reconstruction articles seem sponsored by NOLA, why suze ormon is on the front page, I am not sure --BCO on that side is barely adequate, but the community here is amazing!! We certainly appreciate the work the mods do, but let's be clear, that the men and women who are the heart and soul of this community do not need to be made to feel guilty for not contributing dollars ! They are contributing something so much more, so priceless, their personal stories and testimonies and they have CREATED this community . BCO is a platform which would be meaningless and would not exist were it not for this community of people.

    It seems clear that the mods don't plan to change their plan for Halloween gimmicky fundraising that is offending the very community that they are serving. It's disheartening to read the mods responses to this outpouring of sentiment ---very reasonable sentiment where people are not objecting to fundraising off their personal stories, only objecting to the timing and GIMMICKY nature of it. Thank you all for allowing me to express my opinion. Best wishes to all.

    Sep 17, 2017 10:14AM - edited Sep 17, 2017 10:37AM by Moderators

    Tara17, you are so correct that it is you, all of our members here, who have made this community what it is, through sharing your experiences, and tremendous support of one another. It is truly an amazing place that has helped a great number of people! We mods and the BCO team are here to make sure the platform remains updated and maintained, the technology works, our editorial content is medically accurate and up-to-date and to help guide our members to areas of our site that may be helpful. For some, the expert, and up-to-date content our editors and professional advisors create on our site is very helpful. For some, the discussion forums are where they find the most value. And many find get support in both. Therefore we will continue to grow both our expert-vetted content, and our support community, and work toward integrating these areas to allow for one seamless experience. This will be accomplished over the next years by updating and redesigning our platform, which is complex, time-consuming, and costly. For this we are raising funds.

    We have not intentionally guilted anyone for not having donated. The fact is that few community members donate, and this we have shared, via private message to a few members who have commented here. Selecting if and where you donate is an extremely individual decision. For those who have chosen Breastcancer.org as their organization of choice to make a donation, we are greatly appreciative, and hope that you will continue to benefit from the information and support we provide.

    This campaign is an organizational (BCO) fundraiser, not moderator-only driven. We are here to facilitate the conversation.

    To send a Private Message to the Mods: community.breastcancer.org/mem...

    Sep 17, 2017 10:45AM mebmarj wrote:

    What's done is done. We have voiced our displeasure and disappointment with the "campaign." The show will go on despite those passionate pleas to stop.

    As more than one member has said in the past- no one 'gets it' until they get it. (Not that I would wish even a fraction of what I have personally experienced on anyone.) You couldn't pay anyone to do what some of us have had to endure along with how frightened we were because of breast cancer.

    Our culture has become increasingly politically correct, yet we revert to humor when breasts are mentioned, even when followed by the word cancer. Save the tatas, or I ❤️ boobies are just a few I can think of at the moment. Anything like that for colon, bladder, lung, pancreatic or testicular cancer out there? Hmm? It's the social discomfort of talking about breasts and their perception in our culture- they feed babies, develop as one becomes a woman, attract a potential mate and for some impact a career in entertainment in various ways. And still we can't say breast without using slang or some silly euphemism.

    Let's talk about breasts. Openly. Honestly. Give those body parts behind the cutesy pink ribbon the RESPECT that every other cancer is given. BOOM. Mic drop.

    Perhaps BCO got caught between a rock and hard place when some marketing muckety muck from a high dollar sponsor took the ball and ran with it. Because of the dollar figures at stake-they can't admit that it was an error in judgement now. It started with good intentions at one point. So let them play dress up and have their cocktails to raise money. Perhaps some will think it's in bad taste and not attend- which will have an effect on the bottom line and perception of the organizations connected to the "campaign." Others will remain blissfully unaware. If statistics can prove anything- in hindsight one day some will 'get it' like we (our community) get it.

    I have no kitschy slogan to offer. No suggestions for blingy bangles or baubles to hock. Being open and honest might not be enough to make donations roll in, but it's all I can offer.

    Sep 17, 2017 11:12AM - edited Sep 17, 2017 11:27AM by marijen

    For any of you who have checked out the page "Take the Fright Out of Breast Cancer" here is the link:

    https://secure3.convio.net/bco/site/SPageServer?pa...


    Sep 17, 2017 12:30PM ShetlandPony wrote:

    I do hope that BCO will read and consider well the constructive suggestions on this thread, even though there is a lot of understandable venting and a few off-topic posts here too.

    When I was first diagnosed, BCO was a good source of information to get me oriented. I spent a lot of time reading on the main site. When my mets diagnosis came, BCO became a necessary lifeline of communication with others dealing with breast cancer. These things are worth keeping, and of course some funds are needed to do this. I looked at the Fright web site, and can see that the "Get the Facts" link has some good content. However, the Halloween party theme is totally inappropriate and may damage BCO's reputation. Obtaining the needed funds in the wrong way will not ultimately support the goals and success of BCO.

    I understand that these ill-conceived events are not likely to be called off at this point. But perhaps they can be tweaked to be more respectful. BCO, imagine your mission is to serve another group such as war veterans. War is frightening. War is hell. Soldiers return wounded in body and spirit. A fund raising evening for support services for them would be a classy affair that didn't make light of the experience. Rather, you would praise the soldiers for their bravery and speak of their courage. You would talk about how their lives have or can be improved by certain services. Solidarity and embracing life would be themes. You would not make light of their experience with cute slogans, all the trappings of a celebration, and connecting it with a children's holiday. Well, breast cancer is frightening. Breast cancer is hell. People are wounded in body and spirit. Show some respect.

    The slogan "Take the fright out" is problematic because it is not possible or realistic to take the fright out. The very suggestion shows a lack of understanding and feels dismissive or insulting to those who have fears about breast cancer -- which must be 99.9% of women and a good number of men, too. True courage is being afraid but doing what you need to do anyway. That is where your theme and slogan need to come from. Just a slight shift would make a difference. Don't tell people not to be afraid. That makes it look like you don't know much about breast cancer at all. Instead, tell people to have courage in spite of their justifiable fear, and that they have information and support available.

    I don't understand what will be so terribly expensive about revamping the web site. You need a couple people to curate journal articles and a couple to write content, a couple good programmers, and some moderators. I witnessed first-hand a proposal for expensive programming work where the needed programming was promptly done without fanfare by a single, smart volunteer programmer, while the organization was still busy meeting with the people in suits. I also witnessed a super-expensive, major-philanthropist-funded programming project that ultimately failed because it was out of touch with the end users.


    The vagueness of the description of proposed BCO changes worries me. First, it makes me think the changes will be presented as a done deal when it is too late for constructive feedback. Second, the "more personalized experience" language raises privacy red flags.

    The irony here is that this misguided Fright campaign erodes trust and respect for BCO, as does the caginess about the plans for the money raised. So members and their friends and families will be less likely to offer help and less likely to donate. And the general public also is tiring of the pink party business. People can tell sponsors such as Nordstrom what they think of their involvement in inappropriate campaigns. So please, BCO, take the constructive suggestions seriously and everyone will be better off.

    2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy

    Sep 17, 2017 12:41PM Sara536 wrote:

    Doesn't the focus group used to get community feedback prior to the full-blown campaign seem a bit small compared to the size of the community? BCO: "We sent all the materials to 13 members who had responded." Maybe the outreach wasn't adequate?

    Sep 17, 2017 01:07PM Traveltext wrote:

    Shetland, so we'll put. Of course, I'd hit a like button if I could. I've been awaiting a reply from mods for two months now to my questions on the site revamp, which was announced earlier in the year. Now, with this ill-conceived event being used as the site-fixing carrot for continuing with this campaign, I'm very pissed off. Simple coding changes that me and some mates could do on a weekend on a volunteer basis would improve this website. Attempting to high jack Halloween for these purposes is both absurd and disengenuous to this community, and it presents us to the world in a poor light.

    Everywhere in business you'll find marketing plans being reassessed. Smart companies have a department for damage control. Instead of putting the fixing of this problem on to a community with enough stresses, get management together and come up with a plan to somehow reconfigure this campaign. It really will end poorly otherwise.


    NED breast and prostate cancer. More on Male BC

    Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

    Sep 17, 2017 01:39PM - edited Sep 17, 2017 02:26PM by ABeautifulSunset

    moderators,

    I've been on BCO for over two years. I feel like I have not seen a comprehensive "ask" for donations from members. I'm sure there must be one, but for me, I need to be presented with it pretty clearly In my face in order to see it. I'm sure I'm not alone in that. I think if I had seen it, I would donate. Also, maybe you should have a little donate button on your drop down menu with some info why BCO needs our money to keep giving us the opportunities to communicate with each other. I always think of it as a free forum, so I don't think about what it takes to keep it running.

    As for Halloween, I'm so sad it's my favorite holiday. I don't want to think about my cancer on my favorite holiday. Can't there be times in our lives where we don't have to think about it? Also,this is a kids holiday. Totally unfair to them as well. I don't know who your sample survey audience was, but I see almost ZERO support for this here. Where are all the supporters now? Why don't they speak up? Hope this is a lesson learned.

    Please send me information about donating....i may wait until November. I don't want any of my money going to or being associated with this campaign.

    Thanks.

    Stefanie

    “Sunsets are proof that endings can be beautiful too.” Radiation Therapy External: Breast, Chest wall, Bone Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Targeted Therapy Afinitor (everolimus) Targeted Therapy Chemotherapy Xeloda (capecitabine) Chemotherapy Doxil (doxorubicin) Chemotherapy Chemotherapy Targeted Therapy Targeted Therapy Afinitor (everolimus) Chemotherapy Xeloda (capecitabine) Chemotherapy Gemzar (gemcitabine)

    Sep 17, 2017 02:27PM dlb823 wrote:

    Some great points, and very well expressed, Shetland. The war analogy is spot on, as is the observation about website designers. I hope BCO will take your comments especially to heart.

    Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV

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