Provide feedback/advice about our site and campaigns?!

Excellent member comments here—too many to call out by name or quote here (hmmm, maybe I should change my thinking on the “like” button).

I don’t post a whole lot. I’m not eloquent like many others are. I lurked a great deal during my diagnosis and treatment through 2015/16. This community was invaluable.

Why don’t I have a signature/diagnosis filled out? Because part of my lurking time was reading the whole outbrain (or whatever it is called, as my chemobrain doesnt rember) discussion. Many members I had grown to respect removed their info. Others kept theirs but raised great points and concerns about what you are tracking. They have commented here. I have chosen to leave it blank.

I only became aware of this thread because I was one of many who took great offense to the “take the ‘fright’ out of cancer.” I offered very constructive tweaks, along with many members, and then I just got annoyed and gave up. You did PM me for feedback on the wording for one very small campaign. Thank you for that. I was under the impression you would have reached out to us on bigger items like this site redesign.

I understand this is a charity and I am grateful for this site. I feel like BCO does not know their audience when you ask people who already have cancer, by the way, to donate to early detection and say cancer isn’t scary. The risk for men wasn’t even mentioned. I hardly trust BCO to send me targeted, on-time medical info.

I am only posting now because members have expressed their desire to spread the word. I had gone radio silent on the topic and put the burden on the more experienced members to speak on my behalf. Now that I see it is falling on deaf ears, I’ll post in support of them.

I did look up BCO on one of the charity ranking sites. One of your benchmarks/metrics is how many medical articles you post. That is fine for the right audience. What makes this community valuable is the longtime members who post and the “people” on here. They actually generate visibility for BCO.

It was the community threads that made me realize I should take my lump a bit more seriously and get it checked. Was it frightening to be diagnosed? Yes. Did early detection help? No. I am dealing with life-threatening side effects from treatment. They are rare but not that rare.

If I filled in my signature today, I would get a Pollyanna “you are so lucky it’s treatable article.” The only thing that would do for me now is make me more depressed than I already am.

Sorry for the long-winded post. Again, not eloquent or concise.

Thanks for doing that ceanna.

I've copied the link and posted it on a few sites I frequent.

GP

Part of what happened for me and for many other people in this breast cancer diagnosis treatment and aftercare process is a lot of experiencing that my choices are very limited. I would hate to see BCO move more in a direction where I have less choice. So let me be clear about this. I want to be able to opt in or opt out of tracking of any kind. I want to have better manual control over the profile and diagnosis section so that I can tailor it, rather than BCO tailoring it, to reflect my particular circumstances. I absolutely do not want "like" buttons, and would probably stop using the site and donating if that were added to the discussion forums. I have seen "like" buttons destroy other sites. This is not Facebook, and I do not want it to act like Facebook.

I recognize that BCO is a business, albeit a non-profit, and needs to make decisions about its own sustainability. I'm all for seeing the site enhanced, and more information added. I recognize that BCO needs to have ways to monetize its content. That needs not to be on the backs of the people who are actually participating in the community.

I left bco in 2009 after discovering a bunch of “researchers” posted my comments to their site. I am a research specialist. Was I surprised. Yes. I reported to the moderators. In 2017 I was diagnosed with stage 4. I was desperate for info and support. I came here to find many sisters who provided support and valuable info. I thank them from the bottom of my heart.

That said. A “like” button is not needed. It is irrelevant to the discussion. You can post. “ I like this” if you must.

I also think your content will be biased if you place adds from pharma. We are all overwhelmed with tv ads showing us romping through the park looking fit with nails and hair perfect....not to mention handsome husband and our puppy. No picture of us the day after treatment. Those here do not need my description but having sepsis from chemo poisoning ...it ain’t pretty.

But more importantly we need some expectation of privacy here. We do not use our real names. Do not sell our data, our stories, our grief at learning of a sisters progression or passing. I appreciate this site. I know fundraising is very difficult. I have found info from my sisters that I have never heard from my overwhelmed mo or np.

I have recommended this site to many over the years as a place to read and find info. Suggesting that they need not post if it makes them uncomfortable. Thank you for considering my comments.

i hate those ads too ! Who has a life like that full of energy and happiness taking ibrance?? A slap in the face to those on it not frolicking in glee.

Thanks for writing Melissa - but I don't want to be tracked either. And I don't want ads thrown at me - whether you or anyone else makes a decision about what might be relevant. I have recommended the site to many people over the years - but I still come for the discussion boards. It is so useful for people to touch base with others who have been there. If I can pay something forward, I will. If you start tracking people & tailoring their experience, you will lose me & many others - and all the recommendations we have been pleased to give.

I truly wish management would listen to the organized & cogent thoughts & reviews from members who have taken the time to explain why they are pro or con some of your plans.

And drop the idea of making this site more like FaceBook with 'like' buttons. If I wanted to be on Facebook, I would. I don't. Note - even Facebook is backtracking from being so intrusive.

Even though our posts are anonymous, and BCO might "own" them, the proposed mining of our posts would be an egregious invasion of our privacy and would have a chilling effect. I certainly don't want suggestions for watered-down articles that they think "I might like". I am perfectly capable of doing my own research on the web. Medscape is a great site for medical information. You can browse the whole sight and you can also sign up to be emailed articles about the diseases that concern you. They will summarize andreference the original studies. YOU CHOOSE - They do not mine your browsing history. If you want the complete text of original research, or help in finding more information on a particular subject, you can call the Stanford Medical Library. I am not connected to Stanford - their librarians will help anyone (that is one of their missions) and they will even send you original research papers (for free last time I asked!). BCO does not need to duplicate what is already being done better by Medscape and Stanford.

I am mostly confused by what is going on because the proposed changes are written in airy fairy, blibbity blabbety language that doesn't really make anything clear. Not one bit. Vague, unclear, subject to reinterpretation without notice ... hmmm, does not make me feel secure about any of it. If BC.ORG wants to make changes, leave out the legalese and just say it like it is. 

Like buttons. Horrible idea. Horrible. Are we  a bunch of grade 2 students hoping to get gold stars from our teacher? Every point of view, every single one, is valid. There is NO PLACE for like buttons here, other than to homogenize and exclude. Nope. It would have a very hostile effect in many ways. Don't even go there. A like button is a vote and since we're not electing anyone and this isn't looking like much of a democracy, I vote no. (ha ha)

As for taking the fear out of breast cancer, yeah, right, only if the medical community provides a lobotomy with each diagnosis. Aside from that, women HAVE FEAR so quit trying to talk them out of their very real, very valid feelings. Maybe your slogan should be "Scary as hell, we'll hold your hand." There is a 'tone' to the grandiose idea that anyone can take the fear out of breast cancer. So drop that bit of offensive foolishness because it is hostile to women  (and men) who have every reason to be scared! That approach tells a fearful person they are stupid to be fearful - an insult at the front door of BC.ORG. Bad manners. 

As for making site navigation easier... nope. When I was diagnosed and began Dr. Googling, many of my searches brought up posts here on BC.ORG and that's how, over and over, I found myself on this site. I was drawn here, over and over, by my Google searches handing me relevant, applicable, BC.ORG content written by other breast cancer patients. It is redundant to make the internal search function any different than it is when Google has already made it pretty darn easy to target where you want to be on this site. Over time, with multiple visits here, you learn how to find your way around and if not, off you go back to Google that will zone you in on what you're looking for.  Leave well enough alone. 

I hope that the Powers That Be have the good sense to see, hear and honour the overall tone of what it being said here. What makes this a great site? The posted articles? No. I don't read them. They are like decorative kale on a prime rib dinner, nothing that I consider the main course. It is THE WORDS OF THE OTHER PEOPLE that I come for.  It is those very same people that BC.ORG should be very, very reluctant to walk on with unwelcome and unasked for changes. Know what side your bread is buttered on. If the voices that post here are NOT your main concern, then say so and state who is pulling the strings. But if We The People are the backbone of this site it behooves Those In Charge to proceed with great respect for what was built by the hands of others. 

stage iv forum is the only place mbc meds should be shown otherwise you are freaking other stages out. I agree with ba.

Mods, seriously, I'd suggest your biggest goal is to retain the community of members who come here day after day to support those in need with practical information and moral support.

If you fail at this, the downward spiral of forum site usage will continue and you'll be left with bc information and ads only and there's plenty of sites like this in competition with you.

When I was diagnosed with IDC in December, 2017, I was frightened, anxious and angry. The discussion threads preserved my sanity. Being able to communicate with others who have been there and generously shared their experiences made a huge difference in my life. We all remember how we felt when we first heard our diagnosis. The fear and uncertainty was overwhelming. BCO provides a great service which I will continue to use. A campaign focused on " taking the fright out of cancer " is. Insulting. Cancer is scary.

5 hours ago Moderators wrote:

We have said nothing about mining. We would like to highlight great, informative posts, those with amazing tips and content. There will, we guarantee, be opt-ins, opt-outs, and options for those who exclusively want community, or exclusively want content. Members will be able to put in criteria to best search for and find areas of the site, and content that is relevant and helpful to them.

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That sounds just like the current site. So nothing's changing then?

I'm just trying to lighten up the discussion a bit. Seriously though, the goals stated for the rebuilding and redesign are so broad and non-specific that they are naturally subject to interpretation and quite possibly, misinterpretation. Mods, I realize that this is your site, not ours. But for women and men newly diagnosed with breast cancer, going through difficult treatments, or dealing with life altering side effects, this discussion board is a lifeline. When you say that you are "rebuilding and redesigning" what people view to be their lifeline, people get upset. And when you are so vague about the changes that will be coming, people jump to their own conclusions. So PLEASE, help us out by providing more detail and more information about what will be changing and how the changes will impact the user experience on the site. If you really believe that the changes you will be making will benefit the members of the discussion board, if you really believe that we will embrace these changes and be happy with them, tell us more. Draw people in and make us just as excited as you are about what's to come. By being as circumspect as you are, it suggests that you know that the changes are ones that we may not like. That certainly seems to be the conclusion that most of us are drawing right now.

There are some convenience features that could be updated in the community boards area, particularly in the mobile version where one cannot return to a forum after reading a thread without going through the list and reselecting the forum from scratch (the back button will often log one out as many people login right when they want to post, rather than when they first go to the app).

However, I would caution BCO to be thoughtful before making any large-scale changes (even if they are simply layout / visual changes) to the community boards area. I went through a failure of an attempted site “modernization” / overhaul with YSC about 10 years ago. Their website, and bulletin boards in particular, were very active and extremely valuable to the women diagnosed with breast cancer who sought support there. The new site was complicated and confusing - lots of bells and whistles and it looked “modern” but the boards were changed for the worse and no one liked the changes, as they were a hassle and made it annoying to try to use. All of the people on the boards created a few Facebook groups and moved over there and never returned. There were several attempts after the mass exodus by the YSC to return to the original boards but they were not the same and no one returned. To this day, their boards are empty and I feel sad for the women who are missing out on the invaluable support I received there (and so needed) when I was diagnosed.

The reason I joined BCO is that when I was diagnosed with mets several years ago, the YSC boards were no longer active. Now, I have found my new “family” here! I worry about the same risk for BCO. BCO users will jump to another organization’s forums or to Facebook groups if they don’t like the changes or find them difficult to use.

As far as the boards go, what a website designer may view as new, innovative and modern, a woman dealing with breast cancer and needing an easy way to get support on the boards might find as unecessary, overly complicated and annoying when simple features to communicate are made into a “bleeding edge” design masterpieces.

I would also caution BCO about trying to turn the website into a glossy, commercial marketing machine in an attempt to gain visibility, donors, sponsors and users. Speaking as someone who works for a Fortune 500 company and who has served as a board member of multiple non-profit organizations, what works for a Fortune 500 company to attract customers is not necessarily appropriate for a non-profit and people will be turned off if a non-profit’s actions and “brand”, including its website looks and feels too much like a commercial venture seeking to turn a profit. (Think Komen, which has developed a bad reputation and much public distrust for this reason.) I recommend working with a firm who specializes in non-profit, support-based websites and not the top design firm with no relevant experience for this type of audience.

Melissa, I mean no offense, but how often haven't we heard those same words in the past 2 years (I'm including the Outbrain discussion of 2016), yet by the comments I read here from those of us who care about the BCO discussion threads and value the sharing done here, we still read the same goals of tracking and targeting that we are not in favor of?? The $2.5 million you plan to spend must mean some major changes, unless the money is not being used well. You mention that BCO is moving "slowly from concept to upgrade." What does that mean? Inform us, involve us, and like any organizational change, the more you communicate with, not to, us means we will have better buy-in. If BCO is that unclear about where you are taking this site, that you're already in "Phase 1" and can't forecast the final phase, I think that tells us a lot. It's certainly disappointing and frustrating on the user end and I can see why JFL's story of another discussion board falling apart after unwanted changes led to its downfall. JFL's final paragraph above certainly speaks to me--I hope it does to BCO also!