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

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: Jul 1, 2020 04:16AM - edited Jul 1, 2020 04:52AM by Moderators

Moderators wrote:

Suggest Forum names, forum organization, content you'd like to have addressed, any or all things that could be helpful to us Mods, or the BCO Team. Forum and Topic names are easy for us Mods to change, so can be fluid. Meaning, if the consensus changes, we can make some edits.

Thank you!

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Jul 1, 2020 04:33AM - edited Jul 1, 2020 04:51AM 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)

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Jul 1, 2020 04:34AM - edited Jul 1, 2020 04:36AM by MelissaDallas

This Post was deleted by MelissaDallas.
LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 1, 2020 04:47AM 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.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 1, 2020 05:03AM Moderators wrote:

@MelisssaDallas. Yes, agree. What do you suggest?

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Jul 1, 2020 05:06AM 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)

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jul 1, 2020 05:11AM MelissaDallas wrote:

It should stay in Not Diagnosed But Concerne

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 1, 2020 05:34AM 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!!!

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Jul 1, 2020 05:46AM Beesie wrote:

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.

- I think the current forum name, "Managing Side Effects of Breast Cancer and Its Treatment" is more accurate and appropriate.

I think the current forum name "Positive Genetic Test Results" should be changed to "Genetic Testing" or something more general. Some of the threads in this forum are asking about genetic testing options and others are about what to do after getting negative results.

A long time wish of mine is that these three forums be merged: Not Diagnosed With a Recurrence or Metastases but Concerned, Just Diagnosed With a Recurrence or Metastasis, and Second or Third Breast Cancer.

-I know that there is a difference between a new primary and a recurrence, and between worrying about a recurrence and actually dealing with one, but you can't find that distinction when you look at the threads in this forums. Each of these forums includes threads that would more appropriately fit under one of the other headings. So why not put them all together?

Another possible change would be eliminating the "DCIS plus HER2-positive Microinvasion" forum. That is too narrow a subject. The vast majority of the threads in this forum have nothing to do with the topic of the forum. There have only been 77 threads started in 10 years; it would be a bit of work but these can be individually moved to the more appropriate forum.

Agree with MelissaDallas on High Risk.

A general comment. Straightforward, clear and not overly narrow is best. Too many of the new/proposed names are too cutesy, and presume a direction for the discussion (eg. having difficulty with side effects rather than just asking about them).

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 1, 2020 05:51AM 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.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Jul 1, 2020 11:01AM AliceBastable wrote:

WHY change them? Are you BCO people bored with nothing else to do?

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jul 1, 2020 11:16AM 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.

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
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Jul 1, 2020 12:01PM MinusTwo wrote:

....these three forums be merged: Not Diagnosed With a Recurrence or Metastases but Concerned, Just Diagnosed With a Recurrence or Metastasis, and Second or Third Breast Cancer.

Beesie - I disagree about the third item being combined. A number of us have had 2nd or third breast cancer that are NOT mets. I try to stay away from posting on the Mets threads. I do think recurrence is a different animal.


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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Jul 1, 2020 12:59PM 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".

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 1, 2020 01:02PM MinusTwo wrote:

Good explanation. I'll bow to your wisdom.

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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Jul 1, 2020 01:13PM Beesie wrote:

Ah shucks. Happy

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 1, 2020 01:26PM Beaverntx wrote:

I'm with wrenn. "Life after breast cancer" were the exact words I was looking for at one point. Sharing experiences would not have done the job.


Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 1, 2020 01:46PM 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

Dx 3/10/2017, IDC: Mucinous, Right, Stage IIIB, Grade 2, ER+/PR+, HER2- Surgery 9/11/2017 Mastectomy: Right Dx 12/2019, IDC, Right, Stage IV, metastasized to bone Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Jul 1, 2020 10:49PM edj3 wrote:

Fur Baby Brags! (replace furry friends)--as I posted elsewhere, this is highly infantilizing. I didn't care either way about furry friends, and the title clearly indicated what I'd find inside. Why this change? Is it an attempt to be cutesy? I'd rather you stick with furry friends or something like "all about our pets" (because not all pets have fur).

I agree with wrenn's feedback on Life After Breast Cancer.

Also (and as usual) agree with Beesie's feedback on "Why are the Side Effects Sometimes Worse than the Treatment?" and agree the current title should stay.

And I also agree with her feedback here: Think the current forum name "Positive Genetic Test Results" should be changed to "Genetic Testing" or something more general.


Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 1, 2020 11:22PM 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.

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 3/27/2015, 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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Jul 2, 2020 01:00AM Beesie wrote:

SummerAngel, I don't know that you are in the minority. I agree with you. I made the point differently, which is that I think too many of the new names are "cutesy" and that some are too narrow in focus. Some of the proposed names seem to be the naming equivalent of pinkification.

Maybe short simple names, with clearer explanations below in bolder type so that it's obvious what the forum is about? Right now I think that most people don't read the descriptions below the forum names, so it would help if there was a way to make these descriptions more noticeable, which would allow for simpler forum names.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 2, 2020 02:58AM 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.

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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Jul 2, 2020 03:04AM BlueGirlRedState wrote:

In the end, I do not really care what the forum names are called. I prefer short vs long/fancy and a key word that identifies the forum. It would be nice to have them alphabetized in the search. I do get frustrated at the number of forums that seem to address the same concern, but are separate forums. Some names seem so specific that I might not look at it even though it might have relavent information. Splitters and Lumpers?. SEs - hard to know what to do with that one. Different SEs, different drugs, different people, some one many drugs others not on many dugs, some people seem to get many SEs and others do not. Sometimes SEs mild other times not..... I do like to go through SEs and find out if it is fairly common even if not listed on the pill bottle or by the DR. Better, I like finding out how people manage those SEs and will their approach work for me. Maybe the forum names reflect the nature of cancer, it is more than one disease so there is no one treatment or result.

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Jul 2, 2020 03:06AM 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.

Dx 2014, IDC, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy Multi-catheter Surgery Lumpectomy: Right
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Jul 2, 2020 03:52AM MelissaDallas wrote:

Are they still working on getting format back to a functional page for tablets

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 2, 2020 04:17AM Moderators wrote:

MelissaDallas,

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

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Jul 2, 2020 06:27AM Hopeful82014 wrote:

1) The proposed forum name changes seem pointless and most of those proposed are not an improvement on the current forum names.

2) I agree with Dodger's Girl re: a bookmark. I believe I asked for that a couple of years ago. Yes, we can add a topic to our favorites but that doesn't flag the particular page or comment so it's still a LOT of work to find a specific piece of information, even using the search function.

3) I would LOVE to be able to archive all of our own posts in one place - sort of a private forum that would allow us to find our own posts quickly and, incidentally, serve as something of a history or journal.

4) The new layout is still uncomfortable and the font is NOT adequate for those of us who spend our work days on screens and/or have aging eyes. The old font was fine. The current font makes me feel as though my eyes are about to cross as they constantly work to adjust to it. Why the heck did BCO dive into these changes, particularly at a time when I'd bet that donations are down and funds should probably be spent very carefully?

Dx IDC
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Jul 2, 2020 06:31AM 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.)

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jul 2, 2020 06:33AM - edited Jul 2, 2020 06:34AM by ShetlandPony

The ability to bookmark a post would be fantastic.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jul 2, 2020 06:38AM 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.

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Jul 2, 2020 06:55AM Beesie wrote:

MT1, are people who are newly diagnosed and looking at their options going to know what "Aesthetic Flat Closure" is referring to?

I can see why this is an appealing name to those who are living flat, but as someone who is not in your community (just as newcomers coming here would not be, at least initially), I would have no idea what the term is referring to.

Obviously it's not my forum so my feedback shouldn't influence the decision. I just wanted to raise the question, because I'm sure you want more people, not fewer people, to consider going flat as an option.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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