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All TopicsForum: Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts → Topic: Pathology Report Project

Topic: Pathology Report Project

Forum: Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts —

Moderator generated forum to present our announcements or requests, organization and website news, blog entries and podcasts. Please do not post here if you are not a Moderator. Thank you!

Posted on: Jun 26, 2017 02:37PM - edited Jul 7, 2017 04:59PM by Moderators

Moderators wrote:

Hello !

We're reaching out to Breastcancer.org community members to let you know we're exploring ways to make it easier for you to add your medical information to our site for a more personalized experience.

Specifically, we're testing an image capture/uploading tool, similar to how you deposit checks via your phone for mobile banking, to save you the time and the hassle of entering medical information by hand on our site.

We are wondering if you would feel comfortable sharing an anonymized copy of your Pathology Report with our organization to test this tool. Before sending any images, we'd ask you to blacken out your name, date of birth and personal information. There are two ways you could share your report with us:

1. Take a picture of your pathology report with your phone.

2. Either save directly into the Dropbox app on your phone, or email the images to yourself.

3. Save the images to your computer (e.g. desktop), or on your phone.

4. Click on the link for the Dropbox and select "upload the files from your desktop."

5. You may also Private Message the Moderators your images here.

If you already have an electronic copy of your pathology report and would like for Breastcancer.orgto blacken out your personal details, you can follow the same steps to upload it to our secure Dropbox account. Breastcancer.org will make sure any personal information (e.g. name, date of birth, address) is blocked before sharing the file with our third-party partner who is helping us electronically transfer the information to your Breastcancer.org profile.

At any point, if you need help providing your pathology report, please email our Community Director at mjenkins@breastcancer.org.

Thank you for helping us explore news ways of personalizing your experience on Breastcancer.org!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Posts 61 - 63 (63 total)

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Jul 13, 2017 12:20PM wrenn wrote:

I couldn't agree more Freya. Those with anxiety need to be seeking help on appropriate sites. This is not it. Not fair to us and not fair to them.


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 Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 13, 2017 02:19PM Beesie wrote:

Let's be realistic here. BC.org is what it is. And I can't imagine that anything we say here will change that.

The last time we had an extended discussion about whether this site should be more restricted to individuals with a breast cancer or high risk diagnosis (and their caregivers), while the feelings were very strong among many of the members, the actions that were taken by BC.org as a result of this discussion were completely contrary to what we'd hoped to see.

When we questioned how the long-term inclusion of women without breast cancer (but often with anxiety) was consistent with the mission of this site, the result was a rewording of the mission statement. Topic: breastcancer.org's Mission.... or not?

  • Formerly: "Our mission is to help women and their loved ones make sense of the complex medical and personal information about breast cancer, so they can make the best decisions for their lives."


  • Changed to: "Our mission is to help women and their loved ones make sense of the complex medical and personal information about breast health and breast cancer, so they can make the best decisions for their lives."

.

Another change that came about as a result of the issues/concerns we raised? The creation of the "Benign Breast Conditions" forum, to confirm to those who do not have breast cancer or a high risk condition that they do have a place on this discussion board.

Personally I feel strongly that the "Not Diagnosed but Worried" forum does have a place here. Women (and men) who find a problem and who are going through the diagnostic process are scared and need a place where they can ask questions and get personalized support. I don't agree that the information pages on this site are a good substitute for the advice that's given on the Discussion Board; as pointed out by many of the previous posts in this thread, the information on the medical and editorial pages is often too top line, too much subject to misinterpretation, sometimes biased, and sometimes erroneous. Back in the days when I used to post in the "Not Diagnosed" forum a lot, I often had to provide corrections for information that scared newbies had read, often on this site but sometimes on other sites, that was misinterpreted. The fact is that most people who come to the "Not Diagnosed" forum don't abuse it's purpose. They come here, they go through their appointments and tests, and if they are found to have nothing wrong, they happily leave, grateful for having had the support. The problem is with the minority of people who choose to hang around long after it's determined that they don't have breast cancer or a high risk condition. These people usually either have anxiety issues, or they are cancer wannabes. In all the times that this has been raised previously (the 2014 thread linked above was certainly not the first time), BC.org has been consistent, and we see this in how the board is run and how these individuals are welcomed, whereas those who try to discourage these women from staying have often been told to back down.

If venting about these concerns is helpful, then great, vent away. But know that the likelihood of change - or at least the change you want to see - is extremely slim (and that's probably being generous).


Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 13, 2017 03:47PM MinusTwo wrote:

I don't mind the 'not diagnosed but scared', IF like Beesie says - they come, they get ideas, they get tested, & if they're B-9 they say thanks (hopefully) and go away. Or if they are diagnosed with BC - they get advice on how to fold into threads relevant to their diagnosis.

So there's nothing we can do about the 'wannabees' and the cancer "groupies" who insist on telling scared new comers totally bogus information??? To me its sort of like - if you can't cook, get out of the kitchen. If you haven't had cancer - don't be giving advice. It should be a NO BRAINER. If they don't go away, they should be BANNED.

And there's nothing we can do about newbies throwing their weight around & spewing hatred to trusted & responsible members??? Like Wren says, that's truly not fair to diss member who are trying their best to get through this disease.


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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