The DIAGNOSIS function in our profiles

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Beesie
Beesie Member Posts: 12,240
edited June 2014 in Comments, Suggestions, Feature Requests

Big pet peeve here.  

Ever since people have been able to add multiple diagnoses, we have so many people on the board who have diagnosis lines that state that they are more than one stage.  I can't tell you how often I see diagnosis lines at the bottom of threads that say something like:

Dx 12/17/2013, DCIS, 1cm, Stage 0

Dx 12/17/2013, IDC, 2cm, Stage IIa

It seems to be a habit now to include as a separate "diagnosis" each different pathology finding  And it also seems to be a habit now to include as a separate "diagnosis" the pathology finding from every biopsy and surgery.  So we see people who list 3 or 4 different diagnoses.  

In the example above, this individual does not have DCIS and never was Stage 0.  She has Stage II IDC. The majority of IDC diagnoses include an element of DCIS - however there is no "diagnosis" of DCIS.  It's simply a pathology finding. Yet to look at the board these days, it appears that everyone and her sister has a diagnosis of DCIS, and many are Stage 0 as well as being other stages.

This is leading to a lot of confusion about diagnoses and staging.

I appreciate that if someone has a couple of different types of breast cancer within a single diagnosis, there should be a way to state this. And I appreciate that if someone has been diagnosed twice, there should be a way to show this.  But a single diagnosis is still a single diagnosis, although perhaps with a complex pathology. 

Why can't two types of cancer be checked off within a single diagnosis?  Why can't more than one grade be checked off (since sometimes our diagnosis includes more than one grade)?

Why can't there be a way to ensure that the diagnosis matches the stage?  Stage is input manually, and yet we know that stage is the outcome of tumor size, nodal status and presence of mets.  Could the diagnosis formatting be changed so that the first thing someone picks is the stage, and then a drop down menu presents choices for type of cancer, tumor size and nodal status?  This way, only the choices that are consistent with the stage would be available to select.  

Why are the tumor size options not consistent with the T classifications within the TNM staging system?

And when will DCIS-Mi be added as a type of breast cancer?

Am I the only one frustrated by all this?

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Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2014

    Beesie, thank you for sharing your peeve! There is a big, detailed project now in the works technically to update the Treatment / Diagnosis area of My Profile that is intended to offer more options that members have been asking for. We'll include your points to be sure the team has considered all these issues.

    • The Mods

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    I have a request as well, if possible, regarding changes to the profile page - I think it would be good to include more options in the surgery/reconstruction area - such as revision/repair/removal/replacement - why are these all "R" words, lol!

    Beesie - I am one of the offenders with both DCIS and IDC in my diagnosis listing, I thought that putting it there was for more clarification of my complete pathology, but I can see where my treatment follows the IDC diagnosis rather than the DCIS and could be confusing.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2014

    SpecialK, that is definitely on the list, thanks to members' requests.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2014

    I do agree that we are seeing the DCIS designation used inappropriately.  If a person has an invasive BC then that, being the more advanced cancer, should be the Dx, regardless of whether DCIS was present, shouldn't it?

    DCIS really should be used when it is the only type of cancer found, when it truly is Stage 0. 

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  • MissMaples
    MissMaples Member Posts: 46
    edited March 2014

    Hi Beesie,

    I could not agree more!  I am still new here and therefore will only weigh-in from my limited perspective, but it was very confusing determining how to represent my DCIS-MI diagnosis following my surgery.  As a result I have one the messy and incorrect profiles you mention, oops.  I guess for the time being I will fix it via my signature line, something like you have done.  

    If the profile inputs could "lead" us toward the correct selections as you describe, that would be such an improvement.  And it would hopefully avoid many of the thread chat questions I have read like "hey your profile says you have dcis, but stage 1 with a positive node, how?"  

    Thanks so much for bringing this up, and I will go now and fix my profile mess :)

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    MissMaples,  

    I'm DCIS-Mi too.  I use the signature line for my diagnosis so that I can write it in accurately.  When women with DCIS-Mi use the diagnosis line and are limited by the options there, we often end up with diagnoses that read as "DCIS Stage I".  Most DCIS-Mi women feel more comfortable listing DCIS as their diagnosis rather than IDC, but they correctly put in their stage as being Stage I.  Of course "DCIS Stage I" doesn't actually exist so it just leads to confusion.  But most DCIS-Mi women wouldn't be comfortable listing "IDC Stage I" as their diagnosis (although it's technically more correct) and putting in "DCIS Stage 0" would be wrong on two counts.  

    This needs to be fixed.

    SpecialK, maybe we need an option where someone can select "IDC with associated DCIS" as a single diagnosis.  But honestly I don't know that it needs to be said since it represents about 85% (or even more?) of IDC cases.  

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited March 2014

    I'm not sure I understand. I did a BMX due to high grade DCIS on right breast  and family history. They only found the IDC during the pathology of the uninvolved (at that time) prophylacticly removed breast.  So then would I  be listed as IDC?  It's always hard to put your hx and dx in the box! LOL 

    And I agree with Specialk about the "R" problems. Revivison, Removal, Replacement are much more helpful in the description. Thanks

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    Moonflwr, it sounds as though you had two completely separate primary cancers, one in your right breast and one in your left breast.  So two separate primary cancers (whether diagnosed at the same time or whether diagnosed years apart) means two diagnoses and two different stages for each diagnosis.  That makes sense.  But that points out something else that missing in the diagnosis profile, which is a designation of "right breast" vs. "left breast". Because as it is today, you can't designate this when you input your profile so there is no way that anyone reading your diagnosis line could know that you had two separate cancers, one in each breast.

    The difference in your situation vs. what I am referring to in this thread is that most of the women who list two (or more) separate diagnoses and stages had just one primary cancer that included a combination of IDC and DCIS.  When that happens, according to the staging protocol, that is one diagnosis, which is based on the more serious of the conditions.  So when someone has IDC and DCIS together as part of a single cancer, the DCIS (being the lesser of the conditions) is considered incidental.  The diagnosis is stated to be IDC and the treatment given is based on the IDC.  The DCIS of course is part of the pathology, but then there can be lots of other conditions that are included in the pathology too.  My pathology report had so much in it that it read like a pathology text book for breast cancer.  Diagnosis and pathology are two different things.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited March 2014

    got it. Yes, they also found DCIS as a component of the surprise IDC but IDC part was 1.6. Which of course brings up  how did they missis something almost 2 centimeters?  LOL.  

    And my DX's and S's would be easier to understand if I specified right and left. That way we'd know my left side was the cancer side and had the 7 sx. LOL lazy right side only had 2. LOL

    Thanks,  Mods, for looking for ways to change it for the better.

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