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Help with Abbreviations

Topic: Information to include on profile and bottom of posts?

Forum: Comments, Suggestions, Feature Requests — Request new or improved features, report bugs, & view upcoming changes.

Posted on: Dec 29, 2018 05:53PM

Salamandra wrote:

Hi all and dear lovely moderators,

I'm pretty new here so maybe this has been addressed before, but I've been thinking about the profile we fill out that we can make visible at the bottom or our posts. It has been really useful to me to be able to see the profiles and journeys of others. I was wondering about some things that it seemed to me might be useful to add there.

It is customizable so some women do go and and edit and add some of this - I have added some. But for example, the profile questions asked about oncotype but as far as I can tell, it doesn't show up automatically on the forum signature.

This is what I have thought of so far, and I'm curious about others' thoughts and also moderator's response about whether this is technically feasible and/or desirable to make these optionally visible?

Brainstorming, in no particular order:

  • oncotype/mammaprint/BCI etc scores
  • age at DX
  • Menopausal status at dx
  • Whether the staging is under the pre-2018 or post-2018 guidelines
  • Ranges of size if not the exact sizes - I was confused that my 1.8cm tumor showed up as 1cm in the profile, maybe it could say 1-2cm, if that's as specific as people would like to be displayed?
  • presence of LVI
  • Medical center/hospital of treatment - and/or country/region of treatment
What do people think?
Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 30, 2018 06:55AM edwards750 wrote:

Very thorough although some ladies don’t have the Oncotype test I’m still interested in their score because I had one.

Thanks.

Diane

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Dec 30, 2018 07:20PM Moderators wrote:

Salamandra, those are all great suggestions, thank you! We will send it to the corresponding department where it will be studied and answered as soon as posible.

Thank you!

The Mods

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Dec 30, 2018 07:27PM Skwashie wrote:

The suggestions are really good and I particularly agree with the LVI as it shows an additional risk factor that makes a stage like 1b or 2a placed in better context. The tumour sizing is important too because our tumour sizes are all very personal and the profile info can make one feel like it is minimising.

Dx 6/12/2018, DCIS/IDC, Left, 1cm, Stage IB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 7/2/2018 Lumpectomy: Left Radiation Therapy 8/13/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/25/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 31, 2018 04:13PM Salamandra wrote:

Thank you mods, and also edwards750 and Skwashie. I really appreciate the positive feedback, and mods' openness to exploring this. Maybe there are things I'm missing too, especially for cases more unlike my own.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 1, 2019 05:08PM Moderators wrote:

and we appreciate your insights!

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