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Topic: Need advice --small margin

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

Posted on: Sep 12, 2020 10:23AM

Mysticmint wrote:

Hi again

I had my surgery on 9/4 and my surgeon just called yesterday with the pathology report.

First of all, it is only DCIS. Good news. However, she told me that she only got 1 mm margin. It was a negative margin, but the standard is 2mm. She presented me with the following options she wants me to think about: more surgery to get a larger margin, a bump of some kind in the upcoming radiation (I think she said a few more days) to give a bigger boost, or a watch and see approach since the 2 mm margin is "controversial." I will meet with her on Monday to discuss this further, and she said she will also set me up to talk to the radiologist oncologist to get his/her opinion.

To refresh your memory (if it isnt in my signature), I am 58, no family history, negative genetics (except for one inconclusive RAD50 result), -PR -ER. While my pre-op area was about 5-7cm, my post-op report says that the DCIS was 8mm. High grade.

FOr what it is worth, my dr also said that there were 14 slides made from the cultures and 4 of them showed no DCIS.

Another concern for me is that the DCIS was caught during a mammogram that was less than a year from my previous mammo, so I wonder how fast and sneaky this thing can grow. The reason I got screened less than a year later was for a totally different issue which was no longer there.

I don't relish going back "under the knife" but if it would give me a vastly better chance of going longer without a recurrence, or would give me more peace of mind I would gladly do so. I don't know how I will react to radiation so I am unsure how to feel about that.


I know this is a personal decision but I would welcome any input from this knowledgable group.

Dx 7/14/2020, DCIS, Right, <1cm, Stage 0, Grade 3, ER-/PR- Surgery 9/4/2020 Lumpectomy: Right; Reconstruction (left); Reconstruction (right)
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Sep 12, 2020 01:36PM - edited Sep 12, 2020 01:42PM by muska

I would certainly do what your doctor recommends and depending on what you hear, consider a second opinion.
I would ask the specialists how they explain such a difference between pre-op area and the removed tumor. You need to know nothing was missed. You have an excellent prognosis if it's just DCIS.

Good luck!

Editing to add: your signature says the tumor was 5 cm, however you mentioned above it was only 8 mm. Which one is correct? Also, based on your signature you had reconstruction surgery on both breasts, Is that correct? What kinds of reconstruction and why

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Sep 12, 2020 03:12PM MinusTwo wrote:

Mystic - they don't usually test for HER2 with plain DCIS. However you are ER/PR negative, as I was when I had my mastectomy WITH super clean margins - after a clear mammogram the year before. I had no other treatment at the time, but had a "local recurrence" within 2 years that WAS tested and came out HER2+, and now IDC. Maybe they saved enough of your tumor to test for that now? I would consider talking to a radiologist AND an oncologist, and maybe even another surgeon for a second pair of eyes.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 12, 2020 04:03PM Beesie wrote:

Mysticmint, here are the NCCN Guidelines for lumpectomy margins with DCIS:



What they are basically saying is that with DCIS, 2mm margins are required, but if you are having rads and there is only minimal involvement near the margins, well, that might be okay then. To me that doesn't sound overwhelming positive, particularly with grade 3 DCIS. I've been hanging around here long enough to have seen quite a few recurrences after close margins with grade 3 DCIS; many of those recurrences have been invasive cancer, and a few had progressed to mets. That's not to scare you, but from my experience here, I'd say that close margins on grade 3 DCIS is not something to play around with. And the fix is easy. Lots of people have re-excision surgeries; they are usually quick and easy and then the margin concern is eliminated. I also think in your case, because your DCIS is ER-/PR-, you won't be taking endocrine therapy, which reduces recurrence risk by 50%. Without that in your toolbox, it's even more important to ensure that you have adequate surgical margins.

MinusTwo, what's the reason you are suggesting HER2 testing for DCIS? I'm interested in your reasoning and the benefit to Mysticmint, since there are no treatment differences for HER2+ versus HER2- DCIS and since it's unclear whether HER2+ DCIS is any more aggressive or more likely to turn invasive than HER2- DCIS. Interestingly, 40%+ of all DCIS cases are HER2+, versus only 20% of IDC cases - so it wouldn't be surprising for anyone with DCIS to be HER2+. What intrigues me is that if HER2+ DCIS was more aggressive, and if it developed into HER2+ invasive cancer, then logically (and mathematically) one would expect to see a greater percentage of HER2+ IDC cases (50% or 60%, versus the actual 20%). I've been raising these questions about HER2 and DCIS for 15 years now, and we still don't seem to have any better understanding than we did then. Very frustrating.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 12, 2020 05:09PM - edited Sep 12, 2020 05:12PM by MinusTwo

I agree Beesie. Thanks for the % figures of DCIS that are HER2+. I didn't know that.

They did NOT of course test me for HER2 with my DCIS diagnosis in 2011. And I did not have any other treatment after my DCIS - but did have SNB with my BMX & LOTS of scans for two years since my MO & BS wanted to make sure it was gone. All of my docs were 'shocked & horrified' that cancer re-appeared in 2 years - and even MORE shocked that it was now IDC with HER2+ and stage 3.

I don't know that there is any justification for testing for Mystic. Just thinking maybe more treatment options?? If I'd had my DCIS tested at the time & it came back HER2+ with ER/PR negative, I am positive my MO would have tossed in some chemo just to mop up any stray cells. Which is of course what happened with a 'roving' cell. Likely this thinking is just 'wishful' and not based on science.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 12, 2020 05:55PM Beesie wrote:

Minus, I'm positive that if your DCIS was found to be HER2+, you still wouldn't have received chemo. To my understanding, chemo is never given for pure DCIS - or at least hasn't been for the past 20 years at least. First, it's questionable whether chemo works well on DCIS - I know there are studies that have found DCIS remaining in patients who neoadjuvant chemo and who had an otherwise complete pathological response. Second, chemo is a systemic treatment, given to track down and kill off rogue cancer cells that might be in the body. DCIS is a localized diagnosis, with no direct risk of systemic spread. To my understanding, even with invasive cancer, chemo is never given for local mop-up only - it is only prescribed if there is a sufficient risk of mets to warrant the risks from chemo; the localized mop-up is a extra benefit.

As for your recurrence, the location is odd, but on average 1% - 2% of patients who have a MX for DCIS do end up with a localized recurrence, and at least 50% of those recurrences are invasive cancer. NCCN Treatment Guidelines for years (at least since my DCIS-Mi diagnosis in 2005) have recommended no additional treatment after a MX for DCIS. For those who are ER+, endocrine therapy can reduce recurrence risk by 50%, which would mean a maximum benefit of 1% (off a 1% - 2% risk). This benefit is less than the risk of serious side effects. Similarly, chemo can reduce recurrence risk by approx. 30%, so a maximum benefit of 0.6% - again considerably less than the risk of serious side effects. So while the 1% - 2% recurrence risk is real (and is a lot of women, when you think of how many have a MX for DCIS), our currently available treatments don't reduce the recurrence risk enough to outweigh the risks from the treatments themselves. The exception to the "no treatment after a MX for DCIS" guideline is those who have close margins after a MX for DCIS, and possibly those who are BRCA (or other gene) positive, thereby conferring more than the average 1% - 2% recurrence risk after a MX.




“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 13, 2020 12:14AM MinusTwo wrote:

Thanks Beesie. I am in awe of your knowledge and you are so generous to share with us.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 13, 2020 01:50AM Beesie wrote:

Thanks, Minus. After hanging out here and reading up for 15 years, I'm pretty comfortable with DCIS and small invasive cancers - diagnoses similar to my own. I'm also pretty good on the diagnostic process, mostly because I've had breast issues for 48 years and have had so many biopsies and call backs. Rads, chemo, anything beyond Stage I, etc... I know virtually nothing and leave it others like you who are much more knowledgeable. I just know my lane and I stick to it!

Nerdy

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 13, 2020 10:29AM Mysticmint wrote:

Thanks, everyone.

muska, I am as confused as you about the measurement. Is it possible that the area of calcifications they saw before surgery covered an area of 5cm, but the actual DCIS material they took out was 8mm in total? I am not sure. It is something I will be asking my surgeon tomorrow. I don't know which measurement is more important for prognosis (Beesie?). The reconstruction I had was oncoplastic reduction and lift. Due to the wide incision needed on my right breast, and the fact that I was around a D cup, my BS suggested that I was a good candidate for reduction/lift at the same time to balance the breasts. I saw it as a nice perk (pun intended).

Minus, I initially had your concerns about the HER2+ but reread Beesie's excellent DCIS posts and figured out that it wasn't relevant. However, my high grade ER-PR- does majorly play into my decision. If it was low grade or ER/PR positive I don't think I'd be as concerned about the small margin.

What they are basically saying is that with DCIS, 2mm margins are required, but if you are having rads and there is only minimal involvement near the margins, well, that might be okay then. To me that doesn't sound overwhelming positive, particularly with grade 3 DCIS. I've been hanging around here long enough to have seen quite a few recurrences after close margins with grade 3 DCIS; many of those recurrences have been invasive cancer, and a few had progressed to mets. That's not to scare you, but from my experience here, I'd say that close margins on grade 3 DCIS is not something to play around with. And the fix is easy. Lots of people have re-excision surgeries; they are usually quick and easy and then the margin concern is eliminated. I also think in your case, because your DCIS is ER-/PR-, you won't be taking endocrine therapy, which reduces recurrence risk by 50%. Without that in your toolbox, it's even more important to ensure that you have adequate surgical margins.

Beesie, your comment above puts into words exactly what my initial reaction was. I am definitely leaning toward this option but will hear what my surgeon has to say and talk to the radiologist too. Given that I am relatively healthy and tolerated the first surgery pretty well, I think I could handle a re excision. But again I will have to gather a bit more info.

Thanks again ladies! I tend to be someone who thinks things over privately but this message board has been a great support and resource for me during this crazy time.

Dx 7/14/2020, DCIS, Right, <1cm, Stage 0, Grade 3, ER-/PR- Surgery 9/4/2020 Lumpectomy: Right; Reconstruction (left); Reconstruction (right)

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