BEFORE REQUESTING ACCESS FOR PICTURE FORUM

hi girls,

Just wanted to thank you for your feedback. I am still recovering from the exchange surgery from 9/15/16 and have been trying to follow the threads I posted on but haven't been diligent. I will compose a post to the moderators and find out if we could have a picture forum and what and why they don't currently have one. . I know I saw that someone else posted that they don't like pics attached to some of the forums. When I more consistently coherent I will follow through with inquiring about organizing something. I have a follow up apt from myexchange tomorrow. Hope I'm happier after the compression bra comes off and I can see the results.. Looking down it's not flattering. If I have swelling now, I won't have any breast left. Sorry to complain!!

Remi50

My head is so consumed with my own thread, I am just hearing now about some of the difficulties with gaining access to the Pictures Forum.

I think that perhaps someone on the PIC FORUM or someone long active in the breast reconstruction threads, needs to take over the helm and assume administrator duties, either on the same site nowheregirl (Fumi) uses, or by transferring everything to another server. If you are that individual, or if you know of anyone like that, please enter into a serious discussion with Fumi about this. Fumi is in another country, is very busy with her job and this is becoming far too time consuming for her. Let's take the burden off of her. She has been doing this for twelve years, to my knowledge. I think it is time she is relieved of her responsibilities and commitment to the pic forum.

I know nothing about technology, so it is a foreign language to me. I am just seeing that everything Remi said above is true. The disease is "anxiety provoking" and "important decisions are time sensitive." My pictures are on the forum, and I do not want women to have to wait months and months to see them. We have done this for healing for ourselves, and also and primarily (at least in MY mind) for the women who come after us in the cancer journey. Please let us come up with a solution so that the vetting process can be more quickly performed. I see that JO-5 applied for access and was denied. She has been on these forums for ten years - as long as I have been on this website. I can vouch that she does not "just want to look at pictures".

Thank you.

Deborah

I sent a private request according to the instructions but did not hear back. My third consult for reconstruction revision now recommends over the pectoral placement of the implants, so I really want to see some pictures showing results of that approach. I have posted a number of times on a few different threads and would be glad to share my photos on this private site. I have developed capsular contracture on one side and my implant has migrated on the other. In addition, I have significant hypertrophic scarring that may be helpful for other women to see. In my exchange surgery, the surgeon revised and improved the scars, but they are still significant and now pulling on my skin. Please grant me access. Thank you

wrong forum!

Campbell,

Please read the original post to request access to the picture forum. It is not part of bco and is run by volunteers

I feel that the join requirements for Picture Forum access are inappropriate and insensitive. I am a mother, a wife, a business owner, a volunteer. And I'm battling breast cancer. I asked to join the Picture Forum to help me make critical treatment decisions and at first i got no respose at all. Waited a bit and messaged the other admin and was denied/postponed(?). I followed the exact directions they gave at the beginning of this thread. I was told that the posts I've made in the past aren't enough. I joined this forum in April 2017. I asked to join the Picture Forum at beginning of this month, Sept. 2017. I was told I haven't been a member of this forum long enough. When i joined this forum i had just been diagnosed. As I post this I am about to finish my reconstruction and was never able to access the Picture Forum to help me make any decisions related to my treatment.

It is sad and inappropriate that women who are battling breast cancer, and breast cancer survivors, are being made to jump through vague hoops to access a much needed resource.

I admin a very large group with many join requests daily (not cancer related). I have been the sole admin of that group for over 5 years. I know what volunteer admin duties are like. I understand the burden of screening people to verify that they are real, and that are who they say they are with good intentions. I know exactly what is involved in screening potential group members to keep things on the up-and-up. I am shocked and saddened by the Picture Forum admins process for admitting women who are battling breast cancer. That isn't helpful. That creates additional and uneccessary stress on women who are already carrying a huge burden. I'm not saying that I think they should just let anyone in. I am saying that should reconsider their procedures and policies. They need to figure out a better way or it would probably be better to not have a Picture Forum at all.

The Picture Forum admin told me I needed to spend more time posting here if I wanted to gain access their resource. Which was a resource that i felt I desperately needed, as I was trying to make treatment decisions and time was a factor. i have children and a husband. I'm trying to trying to live my life, enjoy the time i have with my family, savor moments with friends and family & make memories. My family needs me. They have homework, daily soccer practices and gymnastics. I have a full-time job. AND cancer. The Picture Forum admins denied me with vague instructions. They said I should dedicate more time to posting on a board to prove my worthiness for admission instead of living my life and spending time with my family. Their process is insensitive. I find it shocking because the last place I expected to find insensivity towards breast cancer was via this forum.

nowheregirl, in my almost 12 years here, you have helped more women, through your Picture Forum, than anyone else I've encountered.

I was one of the early members of your Forum; I remember well how much effort you put into ensuring that our privacy was protected. Women at their most vulnerable, newly diagnosed with cancer and going through surgery, radiation, reconstruction – post extremely private pictures and discuss those pictures - raw, personal, sometimes painful discussions, much more intimate than anything you see on BCO – because they need help & support and because they want to help & support others going through the same thing. Without your efforts, and without our trust in you, the Forum would never have come to be.

For 12 years you have fulfilled this trust and helped so many women. Don't judge your achievement based on the self-centered rant of one individual.

mrssoul, you have been a member of BCO for about 5 months. During that time, you have posted 5 times, all related to wanting to see reconstruction pictures. I appreciate that you have a busy life and don't have time to post. No problem with that, and no problem for this site. But if you'd read the opening post of this thread, you would have understood that this is a problem for the Picture Forum. As it says, the Picture Forum "is not a photo gallery. If people were only interested in looking at the pictures and didn't post at all, our forum could die at any time." Those granted access to the Forum have always been expected to contribute to the forum by participating in the discussion and hopefully at some point posting their own pictures. Past behaviour generally is the best indicator of future behavior. If you've been too busy to contribute on BCO, then it's fair to assume that you'd be too busy to contribute on the Picture Forum. This means you're not a good fit for the Forum – no matter how much you might want to see the pictures. The Administrators were right to not grant you access.

nowheregirl, I haven't been on your Forum for years. The reason is that it's been 11+ years since my reconstruction and I don't think I have much relevant to add to any discussion. To go to the site and simply look at the pictures and make the occasional comment… I would feel like a voyeur and I would be concerned that I might make the more recent members uncomfortable. However, if there is anything that I can do to help, just let me know. All of us who've been members of the Picture Forum owe you a debt of gratitude.

To the person requesting admittance to the picture forum: your breast surgeon is going to have pictures of befores and afters of women such as yourself. That would be a better way for you, since you are not very active on BC.org, to have access to pictures. We all have busy lives, but choose to give back to this community. I am the president of a corporation, and have my own thread on here. I have two children, a husband, a dog, friends, a sport that I follow, travel, etc. Most women that have had breast cancer are very active, because we don't want to waste any time. I am glad that there are protocols for such intimate and private pictures. I have not requested to see any pictures, I have not posted any pictures of my breasts. It is just not necessary. But for those that need to see what surgery entails, then it is great to have protection for the images contained herein. Thank you ladies for safeguarding such intimate, private, and painful pictures.

Mrs. Soul,

You have expressed ideas about how a picture forum should be run, in your opinion. Just as Fumi did twelve years ago, please feel free to start your own picture forum if you are dissatisfied with hers.

Fumi,

Much appreciation for all you've done on your own time, on your own dime and outside the purview of bco

Ms soul,

Yes, it is a picture forum. However, it is not part of bco. It was privately set and maintained by Fumi, who has been doing this on her own for 12 years, with lilah's help.. Their forum, their rules. Again, if you feel like you can do a better job, you should do it. Best wishes

noted. I'll find a source of support and resources elsewhere. Thanks!

I understand that you want to be protective of the people that post pictures; however, requiring a posting history is discouraging to someone who is newly diagnosed and may not feel comfortable exposing themselves online. That's the most important time for making decisions, and the time that the access to post-op pictures is most useful. May I suggest that you create a sticky on top of this topic with links to online blogs with realistic photos, so that people who don't meet your criteria could get the info elsewhere? It could be a group effort to compile the list, as I know this is a volunteer effort.

Reyepsf, that is wonderful! If you would private message me that info, I can pass it on to people who don't meet our criteria yet but are in a hurry (and really, anyone can meet our criteria if they post and are a member here for awhile).

Thanks,

Lilah

reyepsf-thank you! That would be helpful. As someone who requested access and was ignored, I would find it extremely helpful to have some other options that don't include googling "boobs".

I would ask your surgeon for pictures. They take before and after pics of breasts and may be able to share them. You can also look at medical sites, such as Mayo Clinic, Siteman Cancer Institute, MD Anderson, etc.