Ok, now I'm confused and worried.

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iHEARTu
iHEARTu Member Posts: 213
edited June 2014 in DCIS (Ductal Carcinoma In Situ)
Hello-

For history, in December I was diagnosed with DCIS, highgrade, 10 cm on mammo and MRI. After the BXM surgery the BS said my margins were clear 3mm from chest wall. However, she was surprised and pleased there was no invasion found in the path report. She did mention that she scraped my chest wall.

A month after surgery, I met with the oncol and he said I was not a candidate for rads or chemo, but felt Tamoxifen because of my path and

Then this week I met with my BS for my 2 month and we talked extensively about Tamoxifen. She thought it was a reasonable decision to take Tamoxifen. Then she mentioned it would be a good idea since my DCIS was so extensive and perhaps pathology could have missed an area with some invasion. H u h !!!???

Then lastnight I was reading in the 'DCIS section' where women who had or are going to have rads for DCIS...then this made me more crazy with fear. I've been thinking about this more and more...and more.....should I have done rads!!?

I felt so comfortable with everything till I met with my BS.

Thoughts or words of comfort would be helpful. Thank you.
-Catherine

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  • ladyod
    ladyod Member Posts: 152
    edited March 2010

    Hi from OK!  I am a Minnesotan by birth and in my heart!  I also had a bilat mx, extensive DCIS, mixed grade 2 and 3, my margins were only 1.5 mm from chest wall.  No rad, chemo, or tamoxifen.  My onc told me that the risk was not worth the benefit for me. Node was negative.  I wonder myself, shouldn't I be taking Tamoxifen?  I guess the point is that everyone's journey is different...doctors have their opinions, they take into account your age and type of cells they found....but I think if they thought radiation was called for, both of them would have told you so.  They want a successful outcome for you and would have told you if radiation were necessary.  But if you are in doubt, why not get a second opinion from another oncologist?  That might ease your mind a little...I hope you can find peace!  Remember that following a BMX your risk of reoccurance is only 1% to 1.5% when you have pure DCIS.   Chin Up!   Tammy

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    Catherine, like you I had a lot of high grade DCIS in my breast, and I had a microinvasion of IDC too.  After my mastectomy, I had one margin that was 1mm.  Rads was not recommended. That was over 4 years ago and since then, one new study has come out that has shown that there may be a higher recurrence risk for those who have narrow margins after a mastectomy for DCIS.  But narrow margins are defined as being less than 2mm, and usually less than 1mm.  A 3mm margin is considered acceptable and by standard treatment guidelines does not indicate the need for radiation after a mastectomy.  In my 4+ years on this discussion board, I've only ever seen radiation recommended after a mastectomy for DCIS in cases where the margins have been 1mm or less.

    One thing to keep in mind is as you read through the DCIS section is that "acceptable" margins are different for those who have a lumpectomy vs. those who have a mastectomy.  There's no question that you'll find lots of posts from women who've had lumpectomies for DCIS and who've been given radiation, despite having margins of 3mm or more.  The reason for the different approach is because women who have a lumpectomy still have most of their breast tissue; if margins are small, there's a reasonable possibility that some cancer cells might be left in the breast tissue beyond the margins.  But for those of us who have mastectomies, almost all of our breast tissue has been removed - all that's left is the tiny amount that couldn't be scraped away.  So with a margin of 2mm or 3mm, and with so little breast tissue remaining, the chance that there might be some cancer cells left is very small.  This is why the recurrence risk after a mastectomy for DCIS is only 1% - 2%.

    So, please don't worry that you should have had radiation - that would have been a extremely unusual recommendation for someone with 3mm margins after a mastectomy for DCIS.  Based on the recurrence risk after the mastectomy, the risks from getting radiation would have been greater than the benefits from the radiation (in terms of recurrence risk reduction).  

    I hope that helps!

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  • iHEARTu
    iHEARTu Member Posts: 213
    edited March 2010

    Hi Tammy! I grew up in WI north Milwaukee. I love it here in MN, can't WAIT for spring! It was 50 today! :)
    Thank you for your response. I was so surprised what the BS had said, and it didn't really process until later. I think I got all caught up in the thread and didn't look to see the other ladies margins...and they were less than 1mm. But a 2nd opinion is great advise. Thanks Tammy, I do feel better. catheirne

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  • iHEARTu
    iHEARTu Member Posts: 213
    edited March 2010
    Hi beesie-

    Thank you so much for your response! It's reassuring to hear about your forum experience on this subject. It's amazing how ones mind can wonder with a thought and go overboard with emotions. *sigh* I do feel much better and just knowing I can come to this forum in itself is comforting. Thanks again...I'm just moving on and looking forward to my exchange at the end of May for my new perky girls...LOL!

    catherine :)

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