Topic: Please share suggestions for any and all things related to BCO

Jun 30, 2020 12:03PM - edited Jun 30, 2020 12:21PM by Moderators

Here are some of our Forum name/re-organization suggestions, in no particular order.

Some forums we're thinking of updating to make more appealing, more accurate, or more searchable.

Most forums we weren't going to edit, but are open to your thoughts.

Feel free to provide feedback through next week.

-Breast Health Worries or Concerns? Start here. (replace not dx)

-Stuck in the Waiting (for Test Results) Room (replace waiting for results)

-Benign But Still Concerned (replace benign breast conditions)

-If You've Been Recently Diagnosed, Start Here (replace just dx)

[Suggestion to move The dx and waiting topic into just dx Forum]

-All Things Reconstruction (replace breast recon)

-No Reconstruction? Living flat (replace living w/o recon)

-Why are the Side Effects Sometimes Worse than the Treatment? (replace living with SE)

-Family and Family Planning: make inot two forums - to Fertility After Breast Cancer and Dealing with Family

-Sex After Breast Cancer: Let's Get Real (replace sex and relationship matters)

-Life After Breast Cancer (replace share your experiences)

-Fur Baby Brags! (replace furry friends)

[Already Moved bone health and bone loss to similar dx category with lymphedema]

-How to Handle the BIG Days: Holidays and Such After BC (replace holidays and special days)

[Already changed, but can always change again] -Mental Health: Because Breast Cancer Doesn't Just Affect Your Breasts (replaced emotional crises) We believe that labeling it emotional crises does a massive disservice to people who struggle with mental health after a dx

[Already changed, but can always change again] -Working on Your Fitness (replace fitness and back in shape, move to same category as below)

[Already changed, but can always change again] Still suggesting moving it. -Recipe Swap! (replace recipes for healthy living, also move to a separate category with game threads)

-Life After Breast Cancer (replace moving beyond BC)

-Bonded by Breast Cancer (replace growing friendships)

-Who or What Inspires You? (replace inspiring ppl biographies)

-Prayers and Spiritual Support (replace prayers and spiritual inspiration)

-Caring for Someone with Breast cancer (replace caregivers)

-Caring for Someone with Stage 4 or Mets (replace family and caregivers of stage 4)

-Delete member match-up forum.

[Already changed] -LQBTQA+ with BC (replace LGBTQ, needs the plus for additional identities)

-high risk should move to Connecting with Others

-May Their Memory Live On (replace commemorating loved ones)

-BCO IRL Meet-Ups (replace get togethers)

Jun 30, 2020 12:17PM MelissaDallas wrote:

High Risk, which is comprised of lots of conditions, including gene mutations, is a medical conditio just like all the other medical conditions here. I think we want to discuss our issues in a medical forum, not a social support one that other members are likely to not view and comment on.

Jun 30, 2020 12:36PM ShetlandPony wrote:

Thank you for the list of proposed forum names. Now we can brainstorm together.

Regarding: No Reconstruction? Living flat (replace living w/o recon)

I Think this is moving in the right direction, as I would like to see Living Flat shown as an equally valid choice, not as going without what is “normal” ; i.e. reconstruction seen as the norm. Maybe it would improve things a little more to switch the order in the forum name, like this:

Living Flat (no reconstruction)

Jun 30, 2020 01:04PM Cowgirl13 wrote:

For the most part i think they are good and the suggestions so far are excellent. Eliminate Fur Baby Brags--it is terrible!!!

Jun 30, 2020 01:21PM Cowgirl13 wrote:

I totally agree with Beesie on:

I'm not a fan of the proposed "Why are the Side Effects Sometimes Worse than the Treatment?"

- This new name assumes that everyone is having problems with the side effects. In fact some of the discussion is just asking what the side effects are, or comparing side effects between different treatments. There are even threads talking about the fact that for some, the side effects aren't bad at all.

When I first came here I would have been terrified if I had seen this. Most people coming here are already terrified of side effects. The name will put anyone with a brain into a Panic.

Jun 30, 2020 06:46PM wrenn wrote:

I didn't go through them all but the ones I did sounded like good changes. One that worried me was "share your experiences" to replace "Life after breast cancer". There could be all kinds of experiences posted there including people who are not diagnosed but worried about having cancer.

Jun 30, 2020 08:29PM Beesie wrote:

Minus, you had a non-metastatic recurrence, correct? To me the third forum is not for those who have recurrences, but those who have a new primary, i.e. a second breast cancer, not a recurrence of the first breast cancer. The current description under the forum name says "For those confronting a new primary diagnosis or undergoing treatment." With a recurrence, I'd say you fit into the second forum on the list, which specifies "Recurrence OR Metastasis", but I understand why you want to stay away from Mets threads. So your comment, and our completely different interpretations of who each forum is for, highlights how confusing these 3 forums are and why there is a complete duplication of topics across these 3 forums.

Those who have a metastatic recurrence usually move right away to the Stage IV forums, so there is no reason to have a forum for metastatic recurrences here. However for the pre-diagnosis period, when people are worried and don't know if they have a metastatic recurrence, they need a place outside of the the Stage IV forum. And for those who end up with a localized recurrence, during the diagnostic process they don't know if the recurrence will be localized or metastatic, and sometimes it could end up being a new primary and not a recurrence (if it's the ipsilateral breast). So maybe there should 2 forums:

1. "Worried About a Recurrence or New Breast Cancer" for those who are worried and going through the diagnostic process, not knowing if they will end up with a localized recurrence, regional recurrence, metastatic recurrence, or new primary, or hopefully nothing at all.
2. "Diagnosed With a Localized or Regional Recurrence or New Breast Cancer" for those who have a second diagnosis, whether a recurrence or new primary, that is localized or regional, but not metastatic.

That might not be right, but it's better than the total confusion of current 3 forums. Of course shifting 3 forums into 2 would require moving the existing threads to the appropriate new forum - which probably is a lot of work and kills the whole idea. Merging all 3 forums together would be much easier. So back to my original recommendation, since those with a metastatic recurrence already have a home in the Stage IV forum, is it better to have just one forum, removing the reference to metastatic recurrences? "Worried About or Diagnosed With a Recurrence or New Breast Cancer".

Jun 30, 2020 08:43PM Beesie wrote:

Ah shucks.

I'm not sure my recommendation is right - maybe someone will suggest a better solution. I just know how often I've had to search all three forums looking for a thread that I'd read earlier. Inevitably the thread is never in the forum (of those 3) that I expect it to be in.

Jun 30, 2020 09:16PM DodgersGirl wrote:

I would like to be able to bookmark a post.

Sometimes someone posts a suggestion for a side effect or info an a new drug that doesn’t yet apply to me but it could in the future so I would like to bookmark it so it’s easier to find again at a later date

Jul 1, 2020 06:52AM SummerAngel wrote:

I may be in the minority but I greatly prefer short, simple, and straight-forward names. Most of these are too long and seem like they're trying to talk to unintelligent people. Example: "If You've Been Recently Diagnosed, Start Here" when "Recently Diagnosed" says everything you need to say. Do you really need an entire sentence to tell posters that they're supposed to post there when they've been recently diagnosed? I would leave most of the names alone. Maybe that's just me.

Jul 1, 2020 10:28AM MinusTwo wrote:

Dodger's Girl - it's not a bookmark, but if I want to save things or go back to them, I just add that thread to my favorites.

Jul 1, 2020 10:36AM ceanna wrote:

To the BCO team. Catchy, inane name changes would serve what purpose? "Fur Baby Brags"!!!! You have got to be kidding?????!!!!!Do they clarify what visitors and newbies are accessing? Do they draw someone's attention that normally they would have skipped? Are they to make us more "friendly," or "welcoming?" Would current members be better served by changing?

While some clarification may be necessary for a limited number of the names you list above, please go with short, clear statements that would serve members and visitors best. Again, you're trying to fix things that aren't broken!!!! At least you asked this time before implementing them. I hope this idea of using a suggestion thread continues for any future ideas so you vet before you make any changes like you've done with the threads recently in design and functionality. Those horrible changes still need to be reversed.

Jul 1, 2020 11:47AM Moderators wrote:

MelissaDallas,

Yes, the tech team is working on a fix for you.

Jul 1, 2020 02:01PM ShetlandPony wrote:

I also prefer straightforward names as opposed to cutesy ones. If BCO wants people to take this site seriously and consider it trustworthy, let’s not make the forum titles remind people of a silly magazine that is all fluff and no substance. (Fluffy things may have their place but not when one is looking for help with cancer.)

Jul 1, 2020 02:08PM MT1 wrote:

Can you please name the 'Living without Reconstruction, which shows bias toward breast mound surgery to 'Aesthetic Flat Closure', which the National Cancer Institute just placed as an entry NAMING 'going flat'. This is a win for the flat community, to be sure. This will help end 'flat denial', will allow for better insurance coding, so that insurance companies know exactly what we want when we ask for 'flat' or breastlessness. 'Aesthetic flat closure' IS reconstructive and it is not to be confused with skin sparing mastectomy. Now that we have a name, lets use it.