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Topic: DCIS High Grade Comedonecrosis DMX with positive margins

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 6, 2016 11:38AM - edited Jun 6, 2016 11:39AM by Kroge6

Kroge6 wrote:

I have DCIS High Grade Comedonecrosis in the right breast. I just had a Double Masectomy. We just got the pathology back which stated I had one positive margin and one .3 mm margin. It seems like the doctors aren't too concerned because it is just DCIS. But my fear is that it is high grade and often can turn into IDC. Does anyone have a similar case? The doctors are discussing radiation and additional surgery. I just want the cancer gone. It is so frustrating to get a double masectomy, not nipple sparing and still have cancer.

Dx 4/25/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 5/22/2016 Lumpectomy: Right; Mastectomy: Left, Right
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Jun 6, 2016 01:50PM april485 wrote:

Kroge6, so very sorry that they did not get clean margins for you, especially with a MX!!! I had to have a second surgery because my margins were less than 1mm and in order to have accelerated partial breast rads (clinical trial) I needed wider margins but I had a lumpectomy!

I guess you will have to see what they recommend. Rads are sometimes indicated even with MX so that is not a huge surprise to me, but another surgery? That is not something I have heard of. Hugs and wish you the best!

"Fear has been a huge dictator in my life - so I am trying to stage a coup!" ~ a friend Dx 1/30/2013, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 2/21/2013 Lumpectomy: Left Surgery 3/11/2013 Lumpectomy: Left Radiation Therapy 4/22/2013 3DCRT: Breast Hormonal Therapy 6/20/2013 Aromasin (exemestane) Hormonal Therapy 1/2/2016 Femara (letrozole)
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Jun 7, 2016 03:20PM Kechla wrote:

Kroge6, I'm so sorry that you have gotten this news of affected margins. I also had a BMX at age 37 with saline implant reconstruction (high grade, comedo necrosis, ER+/PR-). It was only about 1.5 cm but deep. I had some issues with my biopsy and my surgeon found some DCIS cells along the biopsy tract and did not get clean margins there at first. He knew this during surgery, so he took more tissue and skin and did get clean margins. The biopsy scar was not taken though.

It is now 8 years later and I have had a recurrence (thankfully DCIS again and not IDC). I found my lump while it was still about 1cm (since it was now so close to the skin), so again I have caught it pretty early. Looking back, I wish I had known to ask more about the margins. Also, they did not take my biopsy scar. I wish they would have. My recurrence is right under my biopsy scar.

Now, I have had a lumpectomy (after a mastectomy - yes, it is a thing), then a re-excision because my margins were not clear (4 focal points). I am now scheduled to have radiation and tamoxifen. The after care was a tough decision for me too. I wanted to still have a recurrence rate of 2% (because I already had the darn BMX's), but doctors think that now that I AM the 2% and now with close margins and multiple focal points that my risk is higher. So surgery alone is probably not a wise decision for me anymore.

BTW, I was tested and do not have BRCA, but my mom did have BC at 49. No other relatives with BC though.

All I can say is that DCIS is tricky. It spreads out and even a cell left behind can grow. You have been strong to make the choices you have made so far. Ask lots of questions and make the right decisions now for your long term health. Also, if you feel you need it, get 2nd opinions. Before I go forward with my treatment, I am getting an e-consult from Mayo. My RO here is setting it up for me. They are going to review all of my pathology and reports.

Best wishes.

Diagnosed at 37 and 45 - Oncotype score 22 “Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” --Mary Anne Radmacher Dx 2/6/2008, DCIS, Right, 1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 3/17/2008 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Dx 4/22/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER+/PR- Surgery 5/4/2016 Lumpectomy: Right Surgery 5/13/2016 Lumpectomy: Right Dx 6/15/2016, IDC, Right, <1cm, Stage IA, Grade 1, ER+/PR- Radiation Therapy 6/28/2016 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 8/26/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/10/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 7, 2016 03:45PM Kroge6 wrote:

Kechla Thankyou for your response, our cases sound so similar. I also have multifocal High Grade DCIS. It feels like every one thinks DCIS is no big deal. I think my only option is radiation. I am so glad you found your recurrence before it was IDC. I am so sorry you have to go through all this again. Best of luck!

Dx 4/25/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 5/22/2016 Lumpectomy: Right; Mastectomy: Left, Right
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Jul 20, 2016 01:05PM yes81 wrote:

I am 35 and just had a unilateral mastectomy for DCIS (>5cm, grade 3, comedo type, 0/4 nodes, Er+/Pr+) My pathology report came back that the upper and chest-wall margins were less than 1 mm. The margins weren't actually positive, and the surgeon said that as long as they were technically negative it didn't matter, but I am somewhat concerned about chances of recurrence. The surgeon did recommend tamoxifen since mine was strongly er+.

Kroge6 have you decided to do radiation?

Kechla, I am so sorry to hear about your recurrence.

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Jul 20, 2016 03:56PM Moderators wrote:

Hi yes81, welcome to!

We are so sorry you are here, but happy you found us. You've come to the best place for support and advice. We're all here for you!

Please don't be a stranger -- come back often, ask lots of questions, and get support here. We look forward to hearing more from you soon!

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Jul 20, 2016 09:09PM Jelson wrote:

this seems to be the type of situation for which a second opinion is in order - should you have a re-excision to obtain clear margins - if you do, is radiation still necessary. I am so sorry that you find yourself in this situation.

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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Aug 19, 2016 12:11AM Kroge6 wrote:

Hello everyone. I have my last treatment of radiation tomorrow. Yay!! The doctors felt that with positive margins it was the best choice.

Yes81- good luck with your choice. Radiation wasn't too bad. And it gives you more piece of mind. I feel like the risks are less than they used to be.

Now I just wait and see!

Dx 4/25/2016, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 5/22/2016 Lumpectomy: Right; Mastectomy: Left, Right
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Mar 17, 2017 09:49PM gocubsgo wrote:

Kechla, Can you share more information about the "e-consult" from Mayo that you referenced?  I would be completely interested in doing a second opinion in this manner!  I think the more information I review, the more confused I get!  Thank you so much! 

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Mar 18, 2017 01:29AM Moderators wrote:

Hi Gocubsgo-

Welcome to BCO! This is an older thread and you may not get a response, but you might find this information helpful:

Couldn't hurt to contact Mayo and find out more!

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