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Topic: Anyone finding New Recommended For You feature useless?

Forum: Comments, Suggestions, Feature Requests —

Request new or improved features, report bugs, & view upcoming changes. Directly share constructive feedback at comments@breastcancer.org.

Posted on: May 14, 2020 04:39AM

Traveltext wrote:

RECOMMENDED FOR YOU

Based on your profile, here are some relevant discussions for you


FOLLOWING TOPICS ARE NOT WHAT I SEARCH FOR AT ALL.


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.

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May 18, 2020 03:59PM Moderators wrote:

Hi Everyone,

Thank you for the feedback you're sharing on the new recommended content feature. We're listening and working hard to make sure this feature works well for all who want to use it. Working with you and taking in your feedback is helping us to address system-wide challenges as well as quick-fix bugs.

Here are a few items we are looking into right now and answers to some specific questions asked on this thread:

  1. Regarding the concern that our active topics have been fewer in number, we want to clarify that this is not related to the recommendation algorithm. 'Active Topics' have always been the topics that have been responded to or created within the last 24 hours. The number of pages in 'Active Topics' will always correspond with how many topics are currently 'Active'. On busier days in the community, it could be many pages, and on slower days it could be just a few. In the event that there is a thread that you would like to follow, we recommend that you "favorite" that topic to find it more easily in case it doesn't appear under the 'Active Topics'.
  2. Our goal in pulling this topic from 'Active Topics' was to avoid it from being recommended, however that didn't work. So, we've made this topic active again and we have found another solution to keep it out of the recommendations.
  3. We agree that a gender selection option in the Profile would be helpful in removing female-specific threads from recommendations, and vice versa. We're working on finding a solution as quickly as possible.
  4. No changes to the 'Favorites' feature have been made. The word "monitored" has always been included in the URL. "Monitored" refers to your monitoring not ours.
  5. Trouble-shooting is a necessary part of product progression. We are continually evaluating how to best make improvements and will continue to communicate with complete transparency.

Our request is that you please continue to work with us. For those who would prefer to wait until the system is working more smoothly, we encourage you to change your setting to "Off" in My Profile.

As many of you know from machine learning experiences on the internet, personalized features work better and better by having actual people use them in everyday life. The more you use the site - just as you would to find information and connect with other community members on our site - the more accurate and relevant recommendations will become for you and others who need the information and support that we provide.

Thanks again for your constructive feedback. To share more of your thoughts, please email the BCO team at comments@breastcancer.org.

The Breastcancer.org Team

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 18, 2020 04:30PM Traveltext wrote:

Nice work BCO.

1. I can indeed confirm that that the fewer number of active posts is due to Google algorithm changes. BCO lost a ton of traffic after these changes which resulted, in my case, in a halving post the posts delivered to me as Active. From six to three pages.

2. Yes, it was weird to see posts that that were in Active, repeated in Recommended. A good fix.

3. Great that the gender issue can be solved.

4. Okay.

5. Good news. I'll certainly continue to work with you.

thanks for the prompt response.


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.

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May 21, 2020 05:27PM ceanna wrote:

First, we were told the "recommendations" were for newbies to the site. Next, BCO acknowledged it was to create profiles to better recommend threads and BCO content toward us. We said we didn't want, that newbies would not be best served by this process and could be misinformed, then this thread was hidden, the "tech glitches" thread was hidden, and if we didn't like the changes we could go elsewhere. I certainly do not understand how BCO thinks this will help anyone new to the site and doesn't feel like this site respects its members. Before I ever log in, I scroll through the list of "active topics" and have noticed that every single time since this unwanted feature started, the "recommendations" for a visitor are as follows:


How in any way is this a helpful feature?? This may be a way to drive traffic to the site, but how would it be of benefit to someone new seeking answers to urgent health issues. They have no profile with BCO, and many of us turned off the "recommendations" long ago, so why persist in spending money developing something that does not seem to be wanted by anyone except "the BCO team?"

I've asked several times for answers from the CEO and Board of BCO, but have not heard answers to the questions we've raised. Please, for the sake of transparency, we need answers.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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May 21, 2020 06:54PM SimoneRC wrote:

So.... I wasn't going to do it, but here I am. Not trying to pile on.

When I was diagnosed, I hit the Google machine and found BCO. I was not a Facebooker, nor an online support person. It was a new experience. I tend to be pretty direct, I was looking for information and experience from fellow members. I thought of the participants as sort of the kids in the house, and the Mods as “grown up" supervision. Most of the siblings get along, some are higher maintenance, we are of different ages/experiences/hobbies, but we all have a common thread. And, the grown up supervisors generally leave us to figure our own stuff out, but are there to put us in time out when needed.

If on individual threads, individual users post things I disagree with, or do not believe to be true, I just keep going right past it. If an individual poster is touting fairy dust as a cure, treatment, prophylaxis - cool. These are the kids expressing and learning and feeling. If it goes too far, the parents (Mods) are here to deal with that.

In my experience, over the 2 years and change since I have been a member here, I feel that our Mods mission has changed and are taking our little family in a new direction but not being upfront about it. There was the referral to send traffic to an expensive post surgery gift website. There was a post created to direct us to an anti-cancer lifestyle website, for just $19.99.... There was the post on the Facebook page where the Mods directed the new user to Center For Restorative Breast Surgery. There are topics started by the Mods here that they put on Facebook that send the Facebook users back here. There are threads started here by the users that the Mods post on Facebook, again to send people back here. It feels to me like we are cheap marketing from the Facebook page to cross sell.

But what exactly are we even cross selling??? I feel like it is almost an invasion of privacy to “record" our “conversations" here and “play" those recordings to “strangers" on Facebook. I know we agree to the disclaimers, etc.... yada, yada... but when you take all of the legalese out, it just feels icky.

This new suggestion thing is easy enough to turn off. I get that. It's just that overall I am getting a “schmarmy" feeling from the whole thing.

I still read from time to time. I used to post in topics where I had first hand experiences or thoughts that could be helpful. Not so much any more and it is a direct reflection of what has been going on. I was sad not to support a new ATM person. I am sad not to share my experience with tissue expanders. Or with pre pectoral reconstruction....

I know it is 100% my choice. Just want to share with others and the Mods.

Stay safe, everyone.


ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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May 21, 2020 08:34PM Beesie wrote:

"I feel like it is almost an invasion of privacy to "record" our "conversations" here and "play" those recordings to "strangers" on Facebook."

Yup. I've only been to the BCO Facebook page one time. I came upon something I had written on this site, and I felt creeped out. I know that BCO own anything I write here and therefore are free to post anything from here on their Facebook page, but it makes me very uncomfortable. I haven't been back to the Facebook page.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 22, 2020 12:33PM - edited May 22, 2020 12:35PM by Moderators

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May 22, 2020 12:41PM magiclight wrote:

Wow! So much information about this BCO website that was not transparent. Thanks to all of you informal investigators for posting this information in a visible thread I can add to my fav's.

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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May 22, 2020 01:30PM Moderators wrote:

Thank you all for your comments. We read and consider them all carefully, and we recognize that at times, like right now we have differences of opinion from some of you about how Breastcancer.org can best help those who come to us. We also recognize that some of you may choose to opt-out of some of the features or programs that we offer, or even find another outlet for information and support. Here's a link to our fuller response to some of the questions raised where we addressed the key concerns. We always encourage you to do what is best for you in all aspects of your life, and we hope that we have been, and can continue to be helpful to you and the many millions we reach, and we wish you all the best.

The BCO Team

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May 22, 2020 02:11PM ceanna wrote:

BCO team. Unfortunately, it doesn't appear to us that you ARE answering our "key concerns." The lack of transparency brings us back here again and again to ask the same questions, and we keep getting non-answers or your statements to basically "go play elsewhere." In my opinion, BCO in the past has been the best place for members to interact and provide critical information in a timely manner. It's the seemingly high-handed, forced changes, the fear of sharing instilled by profiling and tracking, and the failure of BCO to collaborate with actual member users, that make us question that lack of transparency. Again, this is something that CEO Hope Wohl, and the BCO Board of Directors need to address. We await answers from them.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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May 22, 2020 07:23PM MinusTwo wrote:

This just makes me cry. I don't want to "find another outlet". This has been my star and my anchor. I HATE being confrontational, but I don't want to loose everything we've had here.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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May 24, 2020 09:38AM - edited May 24, 2020 11:07AM by JACK5IE

I hate this new feature but mainly because the first thread and the one that has been consistently there is 'Death and Dying Issues'. I know this is a helpful thread for some people and although I am Stage IV I am choosing to think that I can possibly have many years on my treatment. Seeing this thread as a 'recommended for you' thread gives me a sinking feeling in my stomach every time I see it.

Dx 7/2009, IDC, Left, Stage IIB, Grade 2, 4/11 nodes, ER+/PR+, HER2- Dx 12/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy TAC Surgery Lymph node removal; Mastectomy: Left Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast: Breast, Lymph nodes
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May 24, 2020 01:17PM Traveltext wrote:

Mods, JACK5IE and others are showing you clearly that this feature is both an invasion of privacy and potentially hurtful device. Please don’t continue to tell us to go away if we don’t like it. If you can’t fix it, scrap it.


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.

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May 24, 2020 03:18PM Moderators wrote:

JACK5IE,

Thank you for bringing this issue to our attention. Your point is valid, and we will take action to address this. We continue to work to make the system as helpful as possible, and your constructive feedback is much appreciated.

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 24, 2020 04:12PM JACK5IE wrote:

Thank you Traveltext and Mods.

Dx 7/2009, IDC, Left, Stage IIB, Grade 2, 4/11 nodes, ER+/PR+, HER2- Dx 12/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy TAC Surgery Lymph node removal; Mastectomy: Left Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast: Breast, Lymph nodes
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May 24, 2020 07:52PM - edited May 24, 2020 08:05PM by ceanna

Moderators, it is evident that you want to keep pushing forward with features WE DO NOT WANT AND FIND HIDEOUS! By literally harassing someone by tracking their health concerns and forcing upon them a "recommended site" is unthinkable and needs to stop immediately. Instead of your "fix" it indeed needs to be scraped. I'm still waiting for answers from Hope Wohl and Jane Hollingsworth. Sorry Jack5ie you have to experience this.

Generally, legally, harassment is defined as targeting someone else with behavior meant to alarm, annoy, torment or terrorize, and creating reasonable fear in the victim for their safety. Jack5ie, I think you have a case!

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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May 26, 2020 10:25AM JACK5IE wrote:

ceanna...thank you.

Dx 7/2009, IDC, Left, Stage IIB, Grade 2, 4/11 nodes, ER+/PR+, HER2- Dx 12/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy TAC Surgery Lymph node removal; Mastectomy: Left Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast: Breast, Lymph nodes
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May 26, 2020 02:22PM - edited May 26, 2020 02:23PM by Moderators

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May 26, 2020 02:24PM - edited May 26, 2020 03:19PM by Moderators

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May 26, 2020 04:00PM Moderators wrote:

Hello All,

We continue to work to make the system of recommended topics as helpful as possible, and your constructive feedback is much appreciated. For those who would prefer to wait until the system is working more smoothly, we encourage you to change your setting to "Off" in My Profile.

Thank you,

The BCO Team

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May 26, 2020 08:55PM ceanna wrote:

Mods, really??!! Repeating that turning off the feature we want you to eliminate is your solution to the scary, unwanted, dangerous new feature?? Still waiting to hear from Hope Wohl and Jane Hollingsworth.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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May 27, 2020 02:17AM kathindc wrote:

Mods, It is obvious that not enough care went into developing this feature nor enough testing. Traveltext and Jack5ie should never have gotten those recommendations in the first place. Start taking responsibility for what you have done instead of making excuses and telling us to turn it off. Like I’ve mentioned before, try making it that members opt in for the recommendations since you’re hell bent on keeping it. And, the Can We Help Guide You? needs to go or let us opt out of that as well. We come here for information and support, not for “Big Brother” to constantly meddle.

I would still like to know if the money you were raising back in 2017 from your ill-named fundraiser was for this ill-conceived project.

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May 27, 2020 02:45AM Traveltext wrote:

Mods, Sure all of us who don’t want to put up with the inconsistencies of this new feature can opt out, but here’s a good idea, turn the feature off until you’ve solved the issue.


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.

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May 27, 2020 05:50AM MelissaDallas wrote:

Two new members yesterday. Each had first posts on old inactive (for years) threads. Were those threads “recommended” for them?

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 27, 2020 05:52AM Beesie wrote:

Yup, what Traveltext said.

It's business management 101. If the feature isn't working and people are getting inappropriate and upsetting suggestions, you should not be putting it on your member base (your customers) to have to opt out. It's BCO's problem to fix, not your customers.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 27, 2020 08:51AM ceanna wrote:

BCO, if you were retail you would be losing sales in droves! Listen to your "customers." No one is buying your "product" so please stop selling it to us.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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May 27, 2020 09:29AM Salamandra wrote:

I don't understand recommending forum threads while someone is already in the forum. It would make more sense to me to have 'related articles' pop up on a particular forum thread, or 'related forum threads' pop up on a particular article. Or even, 'related forum threads' on a particular forum thread - maybe with a note that people should keep their posts in one thread but use the others for reading.

I could see having a sort of live 'recommended forum threads based on recent browsing' button someone could choose to press, but pushing it into every page of browsing is a lot. It's like I've come to the showroom really excited to buy a new car and every five minutes someone comes and says, 'Hey! Have you seen these trucks, bicycles, and motorcycles? They come in the same colors and they are also vehicles!"

I am wondering what kind of usage they are getting or what kind of analytics you are already getting for them?

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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May 27, 2020 10:30AM MountainMia wrote:

Another thought directed to bco -- if you are intending this as a tool particularly useful to new users, whether members or not, logged in or not, how about the "recommended" items be tips and FAQs for how to use the site effectively? When I first came here, the sheer size and depth of the forum list was confusing. I didn't know "etiquette" for posting, like not duplicating posts, etc. How to use the search function, what are the different ways to find information, etc. THAT would be useful for a new user.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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May 27, 2020 01:39PM edj3 wrote:

Unfortunately, we aren't the customer here folks. Much like Facebook, we are the product. Otherwise, these forums would require a subscription to join and then we'd be the customer. That's internet 101.


(I turned the silly feature off and I don't come here as much any more--loved the research articles when I was newly diagnosed, and adore some of the regular posters but not enough to be the product the way I am with Facebook)

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 27, 2020 02:45PM Moderators wrote:

Hello All!

We really do appreciate your feedback, and are talking about it as a team.

Thanks,

The BCO team

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May 27, 2020 03:34PM ceanna wrote:

Salamandra, BCO tried that a few years ago by putting Outbrain "ads" on threads based on, apparently, a similar algorithm developed from tracking us. After much discussion and protest, BCO finally removed. They also removed the thread that contained the discussion!!

Mods, thanks for talking "as a team." This certainly would have been more important before you spent funding developing something that serves neither members or newbies.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right

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