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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This is the most informative and helpful medical article published on DCIS for both hormone positive and negative diagnosis so sharing - lots of food for thought that has helped me prepare for my next review.
https://www.ncbi.nlm.nih.gov/books/NBK567766/

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@gillbell84

This is the most informative and helpful medical article published on DCIS for both hormone positive and negative diagnosis so sharing - lots of food for thought that has helped me prepare for my next review.
https://www.ncbi.nlm.nih.gov/books/NBK567766/

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Excellent article! THank you so much for sharing!

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@marywc

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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@marywc, have you had your biopsy? Any update?

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@colleenyoung

@marywc, have you had your biopsy? Any update?

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Thank you for checking. I rescheduled my biopsy because I will be on Medicare in a few months and if I wait until then the biopsy will cost $100 as opposed to several thousand if I do it now. So I’m waiting.

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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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They recommending MRI every 6 months for the next 2 years with follow up with breast surgeon. After the 2 years they said it was up to me if I wanted MRI but to still see breast surgeon every 6 months for check

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I was diagnosed with DCIS in which means in situ in one place in the milk duct. It was first found in my right breast and several other atypical cells and hyperplages. I was scheduled to have lumpectomies. Then biopsies in my left breast under MRI found DCIS there. I had already had two lumpectomies there. I elected to have a double mastectomy after seeing how many a typical things would eventually become those that need to be removed. I had had over 13 biopsies in my right breast I felt like I was being stuck by needles all the time and I wanted it to stop. Now I am debating whether to have reconstruction or not. Remember this is my story yours may be completely different and you may have just the beginning of DCIS. I had a second opinion from a very prestigious organization and that's cemented my results. Good luck to you and keep checking and make sure you are getting the best care possible. Good luck!

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@lislordav

They recommending MRI every 6 months for the next 2 years with follow up with breast surgeon. After the 2 years they said it was up to me if I wanted MRI but to still see breast surgeon every 6 months for check

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Could I ask if they said why they recommended an MRI? I did raise having MRI’s with my surgeon back in December but she said it wouldn’t be deemed medically necessary so insurance won’t cover it and the research to date doesn’t support any screening after DXM - but I’m like physical checks are not enough when it comes to DCIS in particular. Any insight your surgeon gave you would be appreciated as I go back in two weeks for my next review. Thanks

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@cax75

I was diagnosed with DCIS in which means in situ in one place in the milk duct. It was first found in my right breast and several other atypical cells and hyperplages. I was scheduled to have lumpectomies. Then biopsies in my left breast under MRI found DCIS there. I had already had two lumpectomies there. I elected to have a double mastectomy after seeing how many a typical things would eventually become those that need to be removed. I had had over 13 biopsies in my right breast I felt like I was being stuck by needles all the time and I wanted it to stop. Now I am debating whether to have reconstruction or not. Remember this is my story yours may be completely different and you may have just the beginning of DCIS. I had a second opinion from a very prestigious organization and that's cemented my results. Good luck to you and keep checking and make sure you are getting the best care possible. Good luck!

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Hi! Do you remember what grade your dcis was? Also how old are you? I have dcis in right breast . Had it removed, now doing radiation. I asked about a mastectomy to my surgeon and they advised against it. I am 46.

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@gillbell84

Could I ask if they said why they recommended an MRI? I did raise having MRI’s with my surgeon back in December but she said it wouldn’t be deemed medically necessary so insurance won’t cover it and the research to date doesn’t support any screening after DXM - but I’m like physical checks are not enough when it comes to DCIS in particular. Any insight your surgeon gave you would be appreciated as I go back in two weeks for my next review. Thanks

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My breast surgeon and plastic surgeon perform the operation at the same time. Able to do reconstruction- didn’t need extender since I wasn’t going larger and didn’t care if smaller. Just wanted the cancer gone and was lucky he was able to do it then. Plastic surgeon performed skin and nipple sparing surgery with nerve grafting to try and get some feeling back down the road. I was told if it does recur it will be in the skin and most likely within the 1st 2 years

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@christylv

Hi! Do you remember what grade your dcis was? Also how old are you? I have dcis in right breast . Had it removed, now doing radiation. I asked about a mastectomy to my surgeon and they advised against it. I am 46.

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I guess since it’s DCIS. And you where probably low grade .Hopefully with the clinical trials they will be able to figure things out draw the fine line where they won’t need to do surgery for DCIS grade 1 and 2 . Mine is multi focal and is a large area so I don’t have any option but mastectomy. They will put expander and send everything to pathology which takes a week. If there is no invasive tissue anywhere then I can schedule reconstruction

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