Question on DCIS outcome

Posted by prc73 @prc73, May 8 3:53pm

Hi there , anyone who was diagnosed with DCIS where it ended up being nothing or it was actually more extensive . Just curious . I have DCIS myself .

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Mine was more extensive in that the MRI showed true extent due to my breast density - it was 5.6cm instead of 1.3cm (mammogram). There is such a range when it comes to DCIS I’m still trying to understand it and there just isn’t enough data out there yet. Because of several factors I opted for bilateral mastectomy and no regrets.

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@gillbell84

Mine was more extensive in that the MRI showed true extent due to my breast density - it was 5.6cm instead of 1.3cm (mammogram). There is such a range when it comes to DCIS I’m still trying to understand it and there just isn’t enough data out there yet. Because of several factors I opted for bilateral mastectomy and no regrets.

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Wow thank you for the update . How was your recovery from the bilateral mastectomy?

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@gillbell84

Mine was more extensive in that the MRI showed true extent due to my breast density - it was 5.6cm instead of 1.3cm (mammogram). There is such a range when it comes to DCIS I’m still trying to understand it and there just isn’t enough data out there yet. Because of several factors I opted for bilateral mastectomy and no regrets.

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Did you have a Brest biopsy in addition to the sonogram? They found DCIS on my right side. I was told it was 5 mm. The biopsy should discern if it is indeed DCIS or IDC (invasive). I’d be interested to know what your biopsy results were

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Yes core biopsy after mammogram and ultrasound - DCIS identified an due to breast density my surgeon said best tongsve MRI to ensure no surprises - surprise was it wa much larger and hence change from lympectomy to mastectomy - biopsy is only a tiny slice so they never know until after surgery what's in there. But thankfully mine came back as all DCIS. It's a journey from biopsy results to post surgery results it was 7 weeks.

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@prc73

Wow thank you for the update . How was your recovery from the bilateral mastectomy?

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I'm 8 months out and doing great. Skiing in Jan& Feb and traininga lot (running and crossfit) so physicslly well - first two weeks post mastectomy as very hard I won't lie but then once drains were out and pain was more manageable I just listened to my body. It's a big surgery but it was the right decision for me and I had reconstruction and lipografting in February. This was much easier and quick recovery.

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Yes mine was large(94mm)! Had double mastectomy.

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@kimmycorvette1

Yes mine was large(94mm)! Had double mastectomy.

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Was yours DCIS also? And only one or both? I guess it's all relative to size of your breast. I had small breasts and so it occupied. 40% of my left breast once they our contrast in during MRI so it mad the decion easy really. I have yet to find someone who has had DCIS negative hormone, large and grade 3 like myself.

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DCIS. Mine was close to 6cm on right breast. Grade 3. Negative for hormones and genetics. Had double mastectomy with reconstruction due to elevated risk and family history. They referred me to radiation oncologist for a consult because margins were clear but close. I got a second option as well. Both said risks outweigh the benefits and do not recommend. I am also almost 7 weeks out. Hugs

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Oh wow you are the first person I have come across with very similar situation. I had DCIS, grade 3, large and hormone negative but left breast - there doesn't seem to be many people with Dcis hormone negative an not much research. I'd love to know what checks your team have recommended post surgery. And interesting that radiation was put on the table I haven't come across this with masectomy in the caseof DCIS - I'm on 6 month check ups now an back in early June at cedars so going to raise the imaging, MRI survelliance again.

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@gillbell84

Oh wow you are the first person I have come across with very similar situation. I had DCIS, grade 3, large and hormone negative but left breast - there doesn't seem to be many people with Dcis hormone negative an not much research. I'd love to know what checks your team have recommended post surgery. And interesting that radiation was put on the table I haven't come across this with masectomy in the caseof DCIS - I'm on 6 month check ups now an back in early June at cedars so going to raise the imaging, MRI survelliance again.

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Will be seeing my breast surgeon in a few days for wound check. I was told I will be seeing her every 6 monthsfor next five years. I guess they will tell me when I go exactly what kind of surveillance they will be doing.

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