Join Us

We are 224,943 members in 83 forums discussing 163,795 topics.

Help with Abbreviations

Topic: Metastatic Breast Cancer Information Sharing and Support Group

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

Meet others in this age-range who share similar life issues.

Posted on: Aug 14, 2013 05:27PM - edited Aug 14, 2013 05:54PM by Moderators

susanagg2 wrote:

This Post was deleted by Moderators.
Log in to post a reply

Page 1 of 1 (5 results)

Posts 1 - 5 (5 total)

Log in to post a reply

Aug 14, 2013 06:34PM leggo wrote:

So what did this say? I'd kind of like to know as it pertains to me. I can't even begin to explain how annoyed I get when posts are deleted. Mods, perhaps you could add a "reason" when deleting posts. If it's spam, ok, but please keep in mind that one person's spam may be someone else's treasure. Just to add, so I don't come across as totally bitchy, when you, the mods, are deleting posts, I'm generally ok with it, but still a word or two about why would be nice. On the other hand, deletions by the community to me are unacceptable. You really have to take that power out of the hands of members. It's irritating as hell.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
Log in to post a reply

Aug 14, 2013 06:46PM - edited Aug 14, 2013 09:37PM by Moderators

It was simply an announcement of a new facebook support group for Metastatic Breast Cancer patients.  I was told:

1.  That I was posing as a breast cancer patient, when I am not one (I offered to send them my medical reports...oh how I wish I was an imposter!!!)  And I asked them why they did not simply ASK me who I was?

2.  That I was engaged in peddling "goods and services" for profit and that is a violation of the rules.  (I am a 66 year old social security recipient living in the Republic of Panama, and I am not selling anything.)  They did not tell me what they thought I was "selling..."

3.  That it is a violation of the rules of this group to post about a support group.  I read the rules and did not see anything like that.  I read every rule carefully and responded to the unnamed "moderrator" by asking them to tell me which rule they claim I violated...

I was diagnosed in April 2012, go right to chemo, do not pass GO, do not collect $200!  Followed up by a mastectomy.  Most of the mets went away, still have them in the bones.   One thing I realized is that the so called "cancer community" is a hotbed of intrigue, intrigue and competition.  Who knew?  I've already been banned by one support group (Ithis for publicly announcing my lack of Christianity) and that's why I started the new group.  The old group was so full of Christian bias and did not provide a welcoming environment for non Christians.  I wanted a group that welcomes EVERYBODY.  Apparently, that is a big no no.   I guess a lot of these websites, if they don't have a religious or political agenda, are affiliated with corporations, who are less than enamoured of the idea of a bunch of people talking about stuff...maybe someone will say something bad about one of their products?

If  you or anybody reading this wants to participate in the new group and is on facebook, they can do a facebook group search.  I am sure that typing in the words "metastatic breast cancer" will find both my group and the "non Christians need not apply" group.  Mine is new and since I just set it up yesterday, only a handful of people have joined. You can also send me a private email if you have any trouble finding the group's page and I will email you back.  Or you can send me a facebook PM.   Please feel free to share.  I wouuld like to have as many people as possible.  

Edited to remove user's personally identifiable information and contact information. If you'd like to reach this member, please exchange contact information through Private Messaging.

Log in to post a reply

Aug 14, 2013 06:52PM susanagg2 wrote:

I should add that in my previous life, I was a civil rights attorney, and I guess stirring up stuff is still in my blood.  The difference is, now I am acting to help myself, whereas in the past it was always for other people.  I found a support group very helpful and learned a lot (and I also contributed a lot, but the moderators could not see that, once I proclaimed my non Christianity, it was good night Irene for me..)  I would like to find one or two people to co moderate the group.  Not that I want to do much"moderating," but because its a closed group, every request to join must be answered, and when I have to travel to the city (I live on an island) for treatment, I may be offline for a day or two and I don't want to make people wait.  Would you consider volunteering?  

Log in to post a reply

Aug 14, 2013 11:09PM stagefree wrote:

The post has already been removed, but I would like to underline (anyway) the fact that BCO and members of the boards have been most welcoming, regardless of our origin, especially our religions.

Ebru, a Muslim

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
Log in to post a reply

Aug 15, 2013 05:41AM HLB wrote:

I agree with leggo on this. I will search for the group and see for myself if I want to join. I don't understand why the OP was deleted.

Dx 10/2004, IDC, 1cm, Stage IIA, Grade 2, 2/11 nodes, ER+/PR+, HER2- Surgery 10/30/2004 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 11/30/2004 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/2/2005 AC + T (Taxol) Surgery 9/15/2005 Reconstruction (left); Reconstruction (right) Dx 7/23/2012, IDC, Stage IV Hormonal Therapy 7/23/2012 Femara (letrozole) Hormonal Therapy 4/1/2015 Aromasin (exemestane)

Page 1 of 1 (5 results)