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Topic: Passing on MX with dirty margins after 2 lumpectomies?

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

Posted on: Jun 17, 2018 11:38AM

Kernaz wrote:

New member, grateful for these boards and all I’ve learned.

I am 44, DCIS intermediate grade comedo type. Strongly positive for estrogen and progesterone. 2 lumpectomies and no clear margins. Dirty margin is behind nipple, so no point in a 3rd try. But BS says it might not be crazy to pass on a MX and just do rads/tamoxifen. I don’t meet with MO and RO for another week, so trying to assess options while I wait.

Anyone pass on an MX with dirty margins? She thinks I won’t need rads given location if I get a Mx, but I’m not sure about tamoxifen—-maybe need for healthy breast unless I do BMX? I have a 6 year old and my highest priority is her, I don’t care about the cosmetics but MX is such a big surgery I’m a bit freaked. I would not be doing reconstruction at least to start. Is it nuts to consider passingon an MX?

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Jun 17, 2018 01:29PM Lula73 wrote:

have you had an mri? Sometimes when they keep getting dirty margins it’s because there’s another area of DCIS that they couldn’t pick up on the mammo or u/s. They assume the area is clear, but sometimes it’s not. After 2 attempts, I’d want an mri to confirm that it’s not more widespread than originally thought. Mammos and U/s are good tools but not 100% accurate-I’m living proof of that along with hundreds of other women on these boards. If MRI comes back positive for additional areas I would do the mx.

The tamoxifen works by basically starving any lingering cancer cells of estrogen which they are using for food. Recurrence can happen regardless of mx, lx, rads, and/or chemo. For a Mom, it is all about being here for your kids. Doing whatever you can to up your odds of being here and healthy for the long term is what’s important even if that means bigger surgery than lx in the short term.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 17, 2018 03:30PM Kernaz wrote:

no MRI yet. BS wasn’t keen on them originally but I will ask about it at my post-op on Tuesday.

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Jun 17, 2018 03:49PM Luckynumber47 wrote:

I didn’t find recovery from mastectomy to be all that hard (and I am much older than you) - and the peace of mind it brings is priceless

My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Jun 17, 2018 05:10PM buttonsmachine wrote:

I was scared of an MX, but mine really wasn't bad, and I recovered quickly. Just giving you my "positive" MX experience. The RO will also be able to advise on how much the radiation can be expected to kill remaining cancer cells, because tamoxifen won't kill cancer cells, it just puts the breaks on their growth.

I second what Lula said: an MRI is a must. Long story, but I had way more disease despite having clear margins and the MRI was the only thing that caught it. It ended up spanning 6.8cm or so. Crazy I know, and different than your situation, but an MRI should really be done for you. Better safe than sorry. Best wishes to you with your decision.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/9/2018 External: Lymph nodes, Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 1/14/2019 Aromasin (exemestane)
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Jun 17, 2018 05:15PM ksusan wrote:

Same. MRI could worse cancer in the other breast. It wasn't palpable or visible on mammogram. I also had a positive mastectomy experience.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 18, 2018 03:07AM aliciacantu84 wrote:

im so sorry for you, being trough al this is a nightmare. Im 33 and with my 3 little kids (7, 6 and 2yo) and totally understand how you feel.

I had a lumpectomy and 2 weeks later they found suspicious imaging in mamo, went trough biopsy and it was more dcis. My sugeon explained that is common and could resultbin multiple lumpectomies and at the end never be sure it they took it all out and rads could just worsen if they left something bad alive in the brest.

I couldnt handle the anxiety and stress no more and thinking in recurence probability was something very hard abd for my kids i decided to go the most aggresive path but the one would give me better prognosis and the quickest way to get out of all this.

I had bilateral mastectomy with skin spearing and expanders implants. First 3 days were hard, im in my 6th day and feeling way better.

The positive facts: no rads, no tamox and almost cero chance to have to go trough this ever again gives me a lot of comfort.

Try to think that dcis is the less worse type of cancer and that we are very fortunate for not having to go trought chemo on top of the surgery.

I hope you find counsel in your doctors and this forms are very helpful as well

Receive my good vibes and ill be thinking in you and keep you on my prayer

Dx 3/30/2018, DCIS, Right, 4cm, Stage 0, Grade 3 Surgery 3/30/2018 Lumpectomy: Right Surgery 6/6/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 18, 2018 08:09AM bella2013 wrote:

Kernaz, not having clear margins is what led me to BMX with DIEP Flap reconstruction. I had two areas of concern and my breast surgeon was confident there was no breast tissue left in those areas...only skin and muscle. My MO and RO were considering treating it with rads. I feared that if there was a cell or two left that it would metastize to my chest wall. I had no lymph node involvement so I had a simple mastectomy...no lymph nodes removed and no muscle from the chest wall removed. My postmastectomy pathology report came back clear. My BS was right but I am so glad that I made the choice of BMX with reconstruction. My MO and RO said that it was like taking a sledge hammer to a fly! I did not need chemo or rads because my Oncotype Score was 14.

I was completely against mastectomy at the beginning of my diagnosis but as I went through my options the path to being cancer free became very clear.

Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/22/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Jun 18, 2018 11:10AM LAstar wrote:

I agree with the suggestion of MRI. It will give you an idea of how extensive the DCIS is. However, you want to do it in the appropriate time of your menstrual cycle and possibly wait until your surgical swelling is not as severe so you are less likely to get false-positive signals in the MRI.

I've read on these boards of 2-week recoveries from MX without reconstruction. Recon was a big hassle. I am happy with my results, but it took a long time to get here due to complications.

After my 2nd unsuccessful LX, I discussed with my radiologist the possibility of doing rads with unclear margins and he said that no radiologist would administer rads to someone who had not fully dealt with the issue surgically first. You might consult with a radiologist about this.

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/5/2012 Lumpectomy: Left Surgery 5/3/2012 Lumpectomy: Left Surgery 6/18/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/4/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/25/2015 Reconstruction (left): DIEP flap
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Jun 18, 2018 03:57PM Heracles wrote:

DCIS is not as simple as docs discuss. Think what is best long term for you and your child.

Routine annual 3D mammogram led to my recent diagnosis of DCIS grade 3.( 2-3 cm in one quadrant) Had two opinions at world renowned specialty hospitals.

After core biopsy had 3 positive and 3 negative margins(<2mm). Because I have a small breast that would be too disfiguring for multiple lumpectomies, I opted for unilateral MX with a SLNB, I also wanted to avoid radiation the first go round. Also my surgeon said she performed 4 lumpectomies on a patient to try to preserve some breast until she could get all postiive margins. Surgeon felt it outcome was very poor buy what patient wanted. A lot of decisions are in your hands.

BIG SURPRISE- Found 75% cancer in mybreast post MX with clean nodes.(not original 2-3CM) Negative margins are huge red flag.

My theory in treating this disease is keep as many tools as you can in the toolbox.

If you opt for lumpectomy and need radiation (may not need) your skin may be compromised if need MX down the road and want reconstruction. DCIS is a recurring disease and very treatable but a pain. MX reduces recurrence substantially to almost nothing. Not trying to scare anyone.

I am doing very well 2 weeks out with MX and expander. Immediate reconstruction with MX standard option where I live. My skin was too thin.

You are doing right thing to take time and consider all options. Know you will find right option for YOU! Thinking of you.


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Jun 18, 2018 10:50PM Moderators wrote:

Thank you for sharing your experiences, Heracles! We're so glad to hear you're doing well after your surgery!

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Jun 19, 2018 08:39PM Kernaz wrote:

thanks for the input.

Met with surgeon today. She wasn’t as negative about the margins as I thought. Thinks she got most of it. Sloan Kettering nomogram risk prediction puts 5/10 year recurrence at 5/8% with rads and tamoxifen. She ordered an MRI. I’ll wait for those results and oncologists’ input before deciding.

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Jun 19, 2018 08:54PM Meow13 wrote:

That's good mine is 23% for 10 year period, I am on year 7.

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Jun 20, 2018 11:38PM LisaK12 wrote:

You may want to consider getting a second opinion as well. My DCIS and LCIS did not show up on my MRI. My BS said it is not uncommon for MRIs to miss certain kinds of DCIS.

I personally would want more reassurance than "thinks she got most of it." How many mms clear were the margins? Most surgeons want at least 2 mms and some say 3 mms.

After two lumpectomies without clear margins I had a double mastectomy with immediate, direct to implant reconstruction and am glad I did because the relief of knowing that the cancer is gone is priceless. No radiation or tamoxifen necessary and I don't have to worry about it any more. Pathology showed DCIS was scattered throughout the left breast (so more lumpectomies would not have gotten it all), and previously undetected LCIS was in the right (noncancerous side). Sentinel node was clear. Recovery has not been bad at all -- frankly it has been far easier than worrying about the cancer was. (Side bonus: no more mammograms!)

Dx 12/29/2017, DCIS, Left, Stage 0, Grade 1, ER+/PR+ Surgery 1/8/2018 Lumpectomy: Left Surgery 1/18/2018 Lumpectomy: Left Surgery 4/9/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 28, 2018 11:37PM Kernaz wrote:

adding this in case it’s helpful for others In the future: you all were right...the RO won’t treat me as she doesn’t consider me a candidate for radiation, given the margins. She said, “not all DCIS is created the same. Yours is the aggressive kind, and the nomograms are way understated for you. You’re lucky you have nothing invasive....get it out now while you have th chance.” MO agreed. So I feel better about the choice now. Still doing an MRI tomorrow so I can look at the other side and decide on bilateral or uni.


Thanks for your input, it was helpful

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Jun 29, 2018 09:39AM Lula73 wrote:

you’re welcome, Kernaz! Good luck with MRI. You had genetic testing? If not, get those results too before deciding bilateral or unilateral. Since mx path of some type is the treatment plan, now is the time to decide on recon and type of recon (implants or natural tissue reconstruction). The same amount of thought and research you put into this decision needs to go into the recon decision and the recon type decision too. Here’s a link to a great set of videos for women undergoing breast surgery regardless of where they’re having it done. They tell you a lot of things other docs leave out (hence the name of the video):

https://www.breastcenter.com/2018/05/01/i-wish-id-known-dr-ordonye-speaks-to-ypo-about-modern-breast-cancer-care/


-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 29, 2018 11:11AM Kernaz wrote:

yes, negative on genetic screening. I have done the reconstruction research and couldn’t be less interested in going that route, at least for now.

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Jun 29, 2018 12:57PM LAstar wrote:

I'm glad you are getting some answers and finding the path forward that makes you the most comfortable. I don't know that I would choose reconstruction again after all I've been through with long recoveries and complications. It's a lot of work to have a couple of blobs on one's chest.

I opted for BMX because of suspicious spots on the contralateral side which turned out to be nothing. I hope your imaging comes out clear on the other side so that the decision is your own. Having a usable arm after surgery and having sensation are really nice perks of a UMX. More surgery = higher probability of complication. I thought of mine as a "matched set" so that if one went, so did the other. I have a different perspective now. Less is more!

Best wishes on your MRI today. I hope you can just rest afterward. Those things really wear me out.

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/5/2012 Lumpectomy: Left Surgery 5/3/2012 Lumpectomy: Left Surgery 6/18/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/4/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/25/2015 Reconstruction (left): DIEP flap
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Jun 29, 2018 04:16PM TrmTab wrote:

I was not given the option of a third LX or passing on MX unless I wanted to find another team of doctors...but I did "simply" have the UMX after the two LX and agree with LAstar...for me the less is more option was best. I do like that my recoveries have been relatively easy as I have always had a good side.

Dx 9/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 12/21/2015 Lumpectomy: Left Surgery 1/11/2016 Lumpectomy: Left Hormonal Therapy 2/5/2016 Arimidex (anastrozole) Surgery 6/3/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 1/1/2017 Arimidex (anastrozole) Surgery 9/8/2017 Reconstruction (left): Silicone implant Surgery 12/17/2018 Reconstruction (left): Silicone implant Hormonal Therapy 5/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 3, 2018 04:38PM TrmTab wrote:

oh, and I was also able to avoid the SNB...after two LX with only DCIS, they marked the sentinal node but did not take it...pending pathology...which was clear of invasive so without SNB I don't have to fear lymphodema...

Dx 9/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 12/21/2015 Lumpectomy: Left Surgery 1/11/2016 Lumpectomy: Left Hormonal Therapy 2/5/2016 Arimidex (anastrozole) Surgery 6/3/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 1/1/2017 Arimidex (anastrozole) Surgery 9/8/2017 Reconstruction (left): Silicone implant Surgery 12/17/2018 Reconstruction (left): Silicone implant Hormonal Therapy 5/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 3, 2018 05:48PM Bosombuddy101 wrote:

My cancerversary is tomorrow and naturally I was drawn to this site that offered me tremendous help and support through my initial struggles with my breast cancer diagnosis last year.

What would happen if a patient agreed to a lumpectomy followed by the standard radiation therapy and there was still undiscovered atypical ductal hyperplasia or atypical lobular hyperplasia in the breast? Would the radiation cause the atypical cells to morph into full blown cancer and possibly metastasis?

“Trouble that can’t be named, tigers waiting to be tamed” ----Coldplay Dx 7/4/2017, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 21, 2019 10:20AM Moonnad wrote:

I am diagnosed with stage 2 breast cancer. I had two lumpectomies and the anterior is still showing positive margins. My genetic testing came back negative and they stated no chemo because my score is 17. First my doctor stated she can’t do anything more and the rest radation has to take care of the rest. I went to my appointment yesterday and oncologist stated my doctor called him and they want to reevaluate me and see if they can offer me another surgery. Before going with my 2nd surgery I asked my doctor if I should do a mascemtomy and she stated no because it’s close to my skin. Has anyone been in my situation and what advice can be given to me?

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Sep 21, 2019 10:42AM Beesie wrote:

Moonnad, I am assuming since you have Stage II that the positive margins involve invasive cancer and not DCIS? This is the DCIS forum, so the situation for those posting here will be a bit different, because DCIS is a non-invasive condition. That could change the recommendations from doctors as to what to do.

I'm sure that there are others on this site with invasive cancer who have faced a similar situation. I'd suggest you start a new post in the Surgery forum (https://community.breastcancer.org/forum/91 ) or the Just Diagnosed forum ( https://community.breastcancer.org/forum/5 ), so that you will attract people with a similar diagnosis. When you are on the page for the forum, there is a "Start a New Topic" button right near the top of the page. That will get the focus exclusively on your question.

Good luck getting the answers and information you need to make your decision.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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