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Topic: What are you doing BC.org? Our posts on FB for the world to see

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: Dec 16, 2018 09:20PM - edited Dec 16, 2018 11:39PM by Beatmon

Beatmon wrote:

This Post was deleted by Beatmon.
Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)
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Dec 16, 2018 10:00PM hapa wrote:

I've never been under the impression that our posts were private. I believe I was able to read all the forums before I even made a login.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Dec 16, 2018 10:06PM - edited Dec 16, 2018 11:40PM by Beatmon

This Post was deleted by Beatmon.
Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)
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Dec 16, 2018 10:19PM hapa wrote:

Ok, I'm confused. How do you think people find this place? Whenever I google anything + "breast cancer" my first four or five results are threads here. And who do you think is clicking on that link besides breast cancer patients who are in need of some support?

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Jul 22, 2019 11:16PM MonicaBstrong wrote:

I love the way this forum is set up and found sanity even when I read older posts.

Dx 2/2/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/5 nodes, ER+/PR+, HER2- Surgery 3/9/2018 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 4/6/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 7/15/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/19/2018 Arimidex (anastrozole)
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Jul 22, 2019 11:22PM Mavericksmom wrote:

I agree Monica! I love this format, and, I don’t have a FB account. I did once but found it frustrating to scroll through all the junk before getting something of interest. I found it, and Twitter, way too stressful and I don’t need more stress in my life!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 22, 2019 11:45PM - edited Jul 22, 2019 11:47PM by viewfinder

MonicaBstrong, wish I could agree with you but I think the set-up could be vastly improved if it's technically possible. The amount of posts per thread per page is way too many, no bookmark ability to save helpful comments, text formatting is poor (if it even works in your particular browser).

I've written these thoughts a couple of times to forum moderators. Content and quality of information is outstanding, presentation and usability could use some improvement.


"You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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Jul 22, 2019 11:57PM exbrnxgrl wrote:

I’m in the dark, since the op has been deleted. This is and as far as I know, has always been a public forum. You do not have to be a member to read through any posts in the forum. If you are not a member you can’t post or search the member list, but nothing is “hidden” from non-members.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jul 23, 2019 12:07AM Beesie wrote:

exbrnxgrl, I think the OP was referring to the fact that some of our discussion threads are highlighted on and fully accessible to the public on BCO's Facebook page.

https://m.facebook.com/pg/breastcancerorg/posts/?ref=page_internal&mt_nav=0

Since our posts are public anyway on this site, it's really no different. And since BCO own the content of the site, they obviously can do this. But given that some people carefully steer clear of Facebook, finding your posts on Facebookmight be disturbing to some.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 23, 2019 12:14AM marijen wrote:

I steer clear of Facebook and I don’t like this one bit. Facebook mines our data like you wouldn’t believe. They’ve probably managed to match our posts to our names etc

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Jul 23, 2019 05:07AM Traveltext wrote:

Agree with Beesie that our posts are public here so I don’t worry about Facebook. I’m on several FB groups which are closed or private. Ironically they they have more privacy than BCO. Anyway, the BCO FB page gathers new comments, and doesn’t transfer comments from here.

Everyone who been on BCO for years must be aware of the huge inroads social media sites like FB have made into traditional BC forums like BCO. The number of daily posts here have dropped off significantly in recent years. This is not to say that BCO has had its day. No social media site has worked out how to list peoples BC diagnosis and treatment history along with each post. This feature makes for way more informed comment.


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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Jul 23, 2019 11:02AM exbrnxgrl wrote:

Thanks for filling in the blanks, beesie

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jul 23, 2019 12:47PM DorothyB wrote:

I joined a couple of cancer support groups on facebook. Those did give me good information, but also scared me a LOT! Seems like on facebook most of those posting are those with problems, while the majority of those without issues are out having fun. On this site, there are a lot of people who are posting great information that is very balanced. I can read about those with problems, but can also read posts from those who are having less side effects, better outcomes, etc.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3

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