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All TopicsForum: Acknowledging and honoring our Community → Topic: Provide feedback/advice about our site and campaigns?!

Topic: Provide feedback/advice about our site and campaigns?!

Forum: Acknowledging and honoring our Community — Share accomplishments, milestones, goals of community members, family members or yourself. Just finished treatment? Just got married? Watched your child graduate? Ran a big run? Been a huge help to members in our community? Let's honor our members here!

Posted on: Nov 14, 2017 02:00PM

Moderators wrote:

Hi All,

We thought we would post this thread as we try to encourage more conversation with our amazing community into changes we make to our site, funding campaigns, and other possible areas where we could benefit from your insights.

Please add your name here if you would be interested in getting contacted via PM to help on specific asks. In general we find 1:1/small group intimate user-testing much more beneficial rather than simply posting on the site in a forum.

We have a very large, amazing and talented community, and we want to tap into as many people's insights as possible. With great appreciation and admiraton! The Mods and BCO Team

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Posts 31 - 60 (74 total)

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Dec 29, 2017 11:12AM nihahi wrote:

Peregrine...your post has made my day. FYI...there is a core group from 2013 that still gets together. We are bonded for life because of what we found together on BCO.

"Comparison is the thief of joy" Dx 10/1991, IDC, 2cm, Stage II, 0/7 nodes, ER+/PR- Surgery 11/7/1991 Mastectomy: Right Chemotherapy 11/29/1991 Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex) Hormonal Therapy 5/31/1992 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/7/1992 Reconstruction (right) Surgery 5/7/1997 Reconstruction (right) Surgery 4/12/2013 Reconstruction (right): Free TRAM flap Surgery 1/8/2014 Reconstruction (right) Surgery 4/14/2014 Reconstruction (right): Nipple reconstruction
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Dec 29, 2017 01:31PM Peregrinelady wrote:

Nihahi, that is what is cool about this site and I am glad to hear that you guys are still in touch. I enjoyed getting to “know” you and was pleasantly surprised to see that you and sbelizabeth are still posting. People like you give the rest of us hope and that is invaluable. Btw, I live 40 miles from the Canadian border and love visiting up there to go to various hot springs. Beautiful country!
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Dec 30, 2017 12:14AM Meow13 wrote:

I am against the like button.

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Dec 30, 2017 12:20AM Rosabella wrote:

you're going to grt people who like something and others who hate it. So why change anything? Metavivor could really use 2.5 mil.

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Jan 5, 2018 03:34AM Traveltext wrote:


It looks like BCO has big plans for the new site, so I wonder if they really want feedback or just another token discussion on the topic. Here's the current ad fundraising for their new site:

"The new Breastcancer.org will help people make important care and treatment decisions quickly, confidently, and with far less anxiety. By leveraging the latest and best technologies available now, we will seamlessly integrate the best qualities of our current site with new features that enable social connections and real time conversations to help people find support and make informed decisions.

It's critical that we rebuild Breastcancer.org, and this project must start NOW ."


Mods, how about posting a précis of the proposed changes and inviting comments. It's too dispiriting going on with backchat here not having a clue what is even planned.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jan 5, 2018 04:16AM kathindc wrote:

I feel BCO is giving themselves way too much credit for the decisions reached by the community for their treatment plan. For me BCO was one of many sites I used to make my decision. Why would you make a decision of such magnitude using just one site. Plus, I can't say I had any anxiety about my decision. Although, I'm sure some do. They are not the be all end all of information on breast cancer.

After the fundraising fiasco, I decided that I would not donate again to BCO and instead give to a worthy research organization to find a cure. I have received three emails about the Facebook campaign and one other since just before Christmas looking for a donation. The last I looked the Facebook one only showed $120 donated over two donations. Plus, seeing their plea twice on their pages is a real turn off for me. Constant "nagging" does not get results they want from me

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Jan 7, 2018 12:41PM nihahi wrote:

I am convinced that we are being "tolerated" as a token discussion. I will not participate in this topic anymore...been around this rodeo too many times.

I also agree that BCO is trying very hard (for reasons I fail to grasp) to become the "Ultimate" expert...sorry...I believe that bco's role in providing expertise in the world of bc is best served by the discussion threads of actual bc patients. That is the part of BCO that I support, and the threads do not need a million-plus $$$ overhaul.


"Comparison is the thief of joy" Dx 10/1991, IDC, 2cm, Stage II, 0/7 nodes, ER+/PR- Surgery 11/7/1991 Mastectomy: Right Chemotherapy 11/29/1991 Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Methotrexate (Amethopterin, Mexate, Folex) Hormonal Therapy 5/31/1992 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/7/1992 Reconstruction (right) Surgery 5/7/1997 Reconstruction (right) Surgery 4/12/2013 Reconstruction (right): Free TRAM flap Surgery 1/8/2014 Reconstruction (right) Surgery 4/14/2014 Reconstruction (right): Nipple reconstruction
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Jan 7, 2018 01:25PM sandcastle wrote:

If...It is not Broke...Do not Fix it...Liz

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Jan 7, 2018 02:53PM Rosabella wrote:

how many times has a product we love gets revamped to new and improved and we yearn for the original formula. I know ive emailed companies saying please dont change the formula and a few years later they do and they lose money. There is nothing wrong here. The discussion forums which is critical since we all have bc in common to share is structured nicely. Adding more go here buttons is maddening. People shouldnt rely on 1 site. Their medical team should be first on the case side of it and here as supplemental. I never read the info stuff, came straight to the forums.

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Jan 8, 2018 12:20AM - edited Jan 10, 2018 11:58PM by VLH

I have to echo concerns about transparency. If the planned improvements are so compelling as to warrant investing $2.5 million dollars that could otherwise be spent on research or financial assistance for those impacted by this horrible disease, why is it not possible to provide more detailed information on exactly what those dollars will buy? What are some examples of the new features? If they cost over $2 million to develop, it seems unlikely that another organization is going to swoop in and steal the ideas simply because they're outlined here.

It's difficult to get behind such a vague concept. A new feature is social connections? I thought that's what the forums I've found so valuable provide? Real time conversations? With whom? Other forum participants? Would that bring, say, a million dollars worth of enhanced user experience vs. the current format?

Lyn

Dx 5/20/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Jan 8, 2018 01:14AM kathindc wrote:

Ok talking about transparency, why do we see on the information pages at least three ads for Ibrance? Is the pharmaceutical company paying for these ads? Makes it look like BCO is pushing the drug, thus giving me the feeling of a conflict of interest.

And the Mods have gone silent again.

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Jan 8, 2018 12:29PM Moderators wrote:

Hello All,

Not going silent, just listening.

Remember, you are invited to join us for a real-time discussion on Wednesday, January 17th @ 12 noon ET. We will follow-up in early January with video-conference details.

Thanks,

The Mods and BCO Team

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 8, 2018 03:46PM Traveltext wrote:


Mods, how about posting a précis of the proposed changes and inviting comments and additions.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jan 8, 2018 05:25PM Moderators wrote:

Traveltext, there are a number of reasons we don't think is a good idea at this time. But we'll explain more in the meeting, and provide you with some ideas! As you know, we are asking for member suggestions and feedback in "user testing". We really can't just open it up to all those on our boards. Too much to take in. Hope you understand.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 8, 2018 07:08PM MelissaDallas wrote:

I daresay the majority of us are working in the middle of a Wednesday

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jan 8, 2018 09:28PM Beesie wrote:

Having spent a career working with market research, normally the “user testing" phase comes in at the very end of the development process. The direction of changes has been agreed upon, the specific changes have been decided, the new/revised offerings have been developed, and then user testing is done to make minor tweaks and to ensure that everything will work as planned.

Mods, is this the stage that BCO is at for the upcoming website changes? Have all the major decisions about changes to the website been made, and are you at the execution / implementation stage? In other words, are you looking for input from the commmunity on what changes will be made, or just how the changes will be implemented (i.e. the user interface)?

If the new direction of the website has been decided, it would be helpful to understand this, since it makes much of this discussion moot.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 8, 2018 09:46PM - edited Jan 8, 2018 10:28PM by wrenn

I think we have to accept that BCO is a business and they will do what they have to do to please monetary contributors and that is what capitalism is about. I am a bit distrustful of this show of interest in what the members want other than using the information for marketing purposes.

The site has been very valuable to many women and men but that is because of what they have given to each other. The contribution of these many women and men can't be calculated. I hope they don't lose this forum and each other. I am forever grateful to the women and men here for helping me.

Edited to add "men". Sorry.


Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 8, 2018 09:48PM HollyDollyD wrote:

A few more thoughts....

It would be nice to have a references section with the latest research (I'm talking PubMed, etc. here - not summarized articles), risk calculators, at the top of each sub-section. Sometimes it's painful to dig through all the stuff to find the latest research.

Just another 5c.

“Courage is the most important of all the virtues because without courage, you can't practice any other virtue consistently.” ― Maya Angelou
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Jan 8, 2018 10:07PM ceanna wrote:

I guess I must have misunderstood what BCO was telling us many months ago, both online and thru the first online meeting--that they would welcome our input, we would have input opportunities, and we would be able to suggest what was changed and how the new design would look and feel for us users. Again, I have to say how disappointed I have been with the results of the first online meeting--I haven't seen follow through on most items discussed, I have only received one followup email asking me for input on a super minor thing about asking for donations, and not one message on what was being changed, or any specifics on this thread which BCO started in response to our asking for it during the online meeting.

The title of this BCO thread is " Provide feedback/advice about our site and campaigns?!" Almost no one saw it and responded to it when it was originally posted. I was out of town and missed it originally and had to ask. I reposted the link to it when someone else asked and now a few of us are responding, but I wonder to what end?

We would love to provide feedback/advice about the proposed site changes but we still have no idea what changes are proposed and what is being worked on that could possibly cost millions of dollars. I just don't get the secrecy, even though the moderators say they are "listening," it appears the only thing they are listening to are our comments about being totally uninformed and uninvolved. Communication is the key to making most anything work. Communication must go in both directions. Trust cannot be built or reinforced if there is no communication.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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Jan 8, 2018 11:09PM Rosabella wrote:

if millions need to be spent to make this site more successful which i dont get it, why on earth not put out choices in posts? I dont get this it'd be too much. How many people are posting in here? Why the select few. If youre looking to make money from us it'd be wise to show the cards to all, not just a select chosen few. Reveal options one stage at a time and say the majority rules. Otherwise its crazy to think youll get anywhere near the huge goal from us esp those who don't have good insurance and are struggling. Sounds like nothing came from the last video conference with 4 people? People work and have lives, thats why discussing it in posts for us all is the best thing to do. But then again like i said, i cant think of anything new and improved that actually is for most.

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Jan 9, 2018 12:28AM kathindc wrote:

No offense Mods but wouldn't it stand to reason that someone from the development/implementation team should be moderating this thread. It is obvious from your comments back to us that you are the go betweens as your answers are guarded and vague. By having someone, in authority from the team, an open discussion could be going on instead of weeks of silence at a time. I don't see where an hour or two, if that, from one person a day would slow down this "urgent" need for changes. You state, " As you know, we are asking for member suggestions and feedback in 'user testing'." Am I wrong here in interpreting this as meaning our input/discussion is not needed for the development of the changes that are to be made? I am one of those members who is not able to do the video conferencing.

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Jan 9, 2018 12:35AM Traveltext wrote:


Like ceanna, I assumed the community was being meaningfully consulted not just being asked for member suggestions and feedback in "user testing". One-on-one consultation is surely a tedious process for you and not a representative way of gauging community input. Sure consultation can be onerous, but how on earth would you know what users here want without this? Top-down changes to websites are old school, and Beesie is right to directly ask "are you looking for input from the commmunity on what changes will be made, or just how the changes will be implemented".

Transparency would be welcomed as it makes our job easier knowing just what role we are to play and how much feedback we should submit that has a chance of being listened to.

Given that the first video conference on this topic wasn't well attended, I'm surprised to hear that you are calling a second one. As has been pointed out, many people here work and others, like me, are on world timezones that put this meeting in the middle of the night.

An answer to these and other questions (new site costs, our role in being sold stuff here, great new features to look forward to, etc) would help us here. Finally, I accept that management can and will make any decision they like, so I'm perfectly happy to block this thread, go back to the "helping" forums, and not waste any more of my time on this issue.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jan 9, 2018 04:06PM Moderators wrote:

Hello All,

We think the best way to present is in a live discussion with us. We will hold multiple sessions to accommodate as many interested people as possible.

Thanks!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 9, 2018 04:35PM SummerAngel wrote:

Breastcancer.org is a nonprofit. As such, there are quite a few software companies willing to give both their products and services for free or nearly so. I've been a software developer and architect for over 20 years. I currently work on the Salesforce platform, which is VERY generous to nonprofits and can perform the functionality you describe. There is absolutely no reason for you to be spending over 2 million dollars on a new site.

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 4/3/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Jan 9, 2018 04:42PM Traveltext wrote:


SummerAngel, this point has been raised many times here over the past many months and BCO is yet to even acknowledge this as a possibility.

Mods, can you please get the word from above on this topic.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jan 11, 2018 10:55AM - edited Jan 17, 2018 02:50PM by Moderators

Ceanna, just a quick point, since our first zoom conversation we have reached out to members to ask for feedback regarding logo design, held two more user testing sessions for site development, asked members to review new content (specifically, MBC), and to provide comments regarding funding messages. Naturally, we cannot get everyone to have input on everything. You will see that a new site with the community and amount of content is quite a large scale project. We have not had anyone offer this scale of work, after much soliciting, pro bono. Looking forward to our conversation next week.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 11, 2018 10:41PM ceanna wrote:

Moderators, while I appreciate your reply to me, I am mystified by it. I volunteered during the online meeting and again in PMs and on threads to "help" in any way with the new design but never received anything from BCO about the proposed website revision. Many others have volunteered here also. During the online meeting it was explained how members local to your physical office were included in feedback and testing about such things as the Outbrain ads (and we know how well that went over) and now, as we all ask about the planning for, justification for, and prototype testing for the $2.5 million update for BCO, you reply that "we cannot get everyone to have input on everything." Wow! That seems more like a door slam than an invitation!!! How about involving the parties here that are interested??? Very, very disappointed.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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Jan 12, 2018 01:53AM kathindc wrote:

Dag, I wished I was asked about the funding messages. During the month of December, I received three emails with the Facebook message and one generic request. And just this past week received a request in the mail. Enough is enough already! If I hadn’t been on this thread and it’s predecessor, I may have caved but probably wouldn’t as I find the amount needed a tad extravagant. Mods, you say no one offered to do the work pro bono. Would like to know how many companies BCO reached out to. And very disappointing that you have not reached out to those in the community who have offered their help. You haven’t even listened to us that your zoom meetings aren’t the way to go as people work during these times. It’s a sure way to get a slanted audience in your favor.The way this is being handled stinks.

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Jan 12, 2018 02:34AM Traveltext wrote:


Like many here, I've offered help and advice on this forum and have not even received acknowledgement let alone a PM. To consult a few people only is not only ludicrous but poor business practise.

If you sent a survey email to BCO's 199,147 members and got just a 1% response, that would be 1,991 replies that would surely be invaluable for planning the new site. Given that it was well over a year ago that you first mooted the site changes, and that you've been conducting "user testing sessions" I'm guessing you're close to launching the new site. I can understand why you might want to get a few more dollars in the tin before you do this, but in the interests of transparency I believe you should confirm that you have exhausted the possibility of charitable funding from the many tech companies looking to help worthy NGOs like BCO.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Jan 12, 2018 12:51PM - edited Jan 17, 2018 12:09PM by Moderators

Apologies, we have a different number. New Number https://zoom.us/j/808344717

We are still in the first of three phases to build our new site and will be seeking your input as needed throughout the entire project. In this first phase we are planning, designing and developing new page templates for the full site – including the medical content pages (articles, blogs, videos & podcasts), donation pages, and our community discussion forums.

As we work on the community sections of the site, we are bringing forward the ideas you and others on the site have offered about features that are important to you. We are inviting community members to join us for user testing throughout this phase. User tests are a combination of physical, in-person sessions (thus far in NYC and Philadelphia) and virtual sessions over Zoom and/or Skype.

If you'd like to raise your hand to be a part of our user tests, please let me know. We hope to accommodate everyone who is interested.

To learn about our site redesign plans in 2018, join us for a real-time discussion on Wednesday, January 17th @ 12 noon ET.

If you wish to remain anonymous, you can keep your computer's video turned off when prompted at sign in.

Join from PC, Mac, Linux, iOS or Android: Apologies, we have a different number. New Number https://zoom.us/j/808344717

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

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