DCIS- getting clean margins

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Denverbarb18
Denverbarb18 Member Posts: 14

Hi - I was recently diagnosed with DCIS and from the initial looks of things (MRI clean as it looked like biopsy got it all and small amount on mammo) treatment looked pretty easy.  However, had the lumpectomy and did not get clean margins.  This is all so confusing for me as apparently DCIS does not always show up on mammo or MRI and only on pathology report.  So now I am scheduled for my second lumpectomy on Friday and am petrified.  I am curious how often that this happens (that DCIS is there but only apparent after pathologist looks at tissue)?  I mean - are they going to keep taking more and more until they tell me I have to have a mastectomy?  While I know that it would not be the end of the world to have to do that, I am trying to work, take care of family and that seems like it will be a huge disruption to my life.  Of course, I want to live as long as possible as I am only 46 and have a child under 10 and want to see her grow up.  I seem to be rambling a bit so basically my question for the group is:

1. How common is it for them to find more DCIS that does not show up on other tests (mammo/MRI)?

2.  Given that, how would I know if I have DCIS in the other breast, unless I just removed the breast and had it biopsied?  How would one know whether to have one or both breasts removed?

I do plan to ask my surgeon these questions when I see her this week but was wondering if anyone has any info on this.

I have just joined this group and am really grateful to have found it.

Comments

  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Hi Denverbarb,

    My understanding is that about 20% of all lumpectomies for DCIS have come back with a small amount of IDC in the lesion so getting clean margins is imperative for this reason as well as finding more DCIS than originally thought was there by the biopsy. It is not that uncommon an occurence as a biopsy just samples parts of the microcalcs and therefore can't actually predict size. The pathology after lumpectomy is where they determine most of the pathology of the BC. Clean margins are one of the single most important factors for recurrance so it is uber important that this is achieved. Depending on the size of your breasts, sometimes a third surgery may have to be done to achieve this. After that, I am pretty sure they would recommend a mastectomy.

    It is common to have to do a re-excision anywhere from 20-40% of the time by what I have read. I am waiting for my path results and will get them this Tues the 5th at my post op appt. I had my lumpectomy on 2/21.

    As to #2, you would just have to keep getting regular mammos or diagnostic mammos on the other breast as that is how DCIS is generally discovered. DCIS by nature is in-situ and does not spread to your other breast. Even IDC does not spread to your other breast (or rarely if ever does) so it would be a new primary if found in the opposite breast.

    Wishing you the best and hoping you get the all clear after your re-excision! Hope my post helped a little. You also might want to read Beesies post on DCIS in this section. It explains a whole lot about what we have!

  • Lolalee
    Lolalee Member Posts: 225
    edited March 2013

    Hi Denverbarb,  I can only tell you about my experience with DCIS.  First scan and lumpectomy  revealed 11mm lesion with 1mm clear margin on chest wall, all other margins were clear by >1cm.

    Rx was recommended.  I had another lumpectomy to get bigger margins then 4 out of 5  BS's recommended no Radiotherapy.

    I insisted on MRI, ultrasound and mammo before making final decision and shocked to discover further DCIS present.  It had been there all along just not picked up on previous scans.  I then proceeded immediately with Mx and have not regretted my decision.

    I had one breast (left) removed and the other reduced and lifted.  I have TE reconstruction and will have implant exchange in May.

    I will continue with yearly mammo and MRI to monitor any further problems.

    RX was not recommended after MX. 

    It is a difficult decision to make and only you can make the decision which is right for you.

    Best wishes,

    Lola.

  • ballet12
    ballet12 Member Posts: 981
    edited March 2013

    Hi Denverbarb,

    About whether they find more DCIS than what is found on mammo and MRI, as you said, they can't really diagnose DCIS from Mammo/MRI, only from a biopsy and then review by a pathologist.  After a core biopsy, they still can't assess the amount. I presume they estimate it from the mammo/MRI, and then determine the extent from the surgical biopsy.  My DCIS wasn't even found, at all, at the time of the stereotaxic biopsy.  ADH was diagnosed from the samples taken at the stereotaxic biopsy. The DCIS was diagnosed with the first large lumpectomy (which was really an excisional biopsy--since there had been no diagnosis of DCIS).  Mine was found to be multifocal and positive to all margins.  I needed two subsequent surgeries to get it all.  I have even communicated with someone on this board who had four lumpectomies done to achieve clean margins (and knew of one other case through a breast surgeon who is a friend of the family).  I guess when you get into the third and fourth surgeries, you start to deal with the cosmetic defect issues resulting from multiple surgeries to smaller breasts, as well as concerns that you might not get clean margins even after the third or fourth surgery.  I gambled (avoiding the mx), and had clean margins by the third surgery, but a not too pretty breast (and significant assymetry).  Somehow, radiation has improved its looks, crazy as that may seem.  To me it was worth the gamble.

  • Lolalee
    Lolalee Member Posts: 225
    edited March 2013

    April, best wishes on a good path report on the 5th.  Please keep us posted.

    I had my pathology slides reviewed by 2 different doctors just to make sure that an invasive component had not been missed.   It was pure DCIS both times.

    Best Lola.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited March 2013

    I had 2 lumpies and the surgeon said go to rads

    RO pulled another mamo and found more DCIS about 2 " from the earlier.  Since it was still in the same quadrant and I am a DD, the surgeon did a third lumpie

    did my rads, am finishing up now on my 5 years of aromasin and looking forward to Dec 31 and ending the meds~

  • SJW1
    SJW1 Member Posts: 244
    edited March 2013

    Dear Barb

    It is upsetting when you go through a lumpectomy and they tell you that you didn't get good margins. This happens way to often.

    When it happened to me in 2007, I consulted with Dr. Michael Lagios, a world renowened DCIS expert and pathologist with a consulting service that anyone can use. He disagreed with my local pathologists and said I did get good margins. He also downgraded my DCIS from grade 3 to grade 1/2. He then calculated my risk of recurrence without radiation as only 4 percent. With such a low risk, I decided to save this tool (which you can only use once) in case I ever got invasive cancer.

    I now have a yearly Aurora RODEO MRI to make sure I don't have any invasive cancer. With its 11 percent false positive rate and 1 percent false negative rate, I avoid unnecessary biopsies and at the same am reassured I am cancer free.

    Please feel free to PM me or check out my website if you have any questions: http://dciswithoutrads.com/

    Best,

    Sandie

  • ballet12
    ballet12 Member Posts: 981
    edited March 2013

    Hi Denver,

    My path slides from the first lumpectomy were re-read by the second facility which did the two subsequent lumpectomies.  Confirmed to be pure DCIS.  The next two path results were not re-read by anyone, but I went with it (Memorial Sloan-Kettering).  Anway, it's all radiated now (and hopefully gone).

  • Denverbarb18
    Denverbarb18 Member Posts: 14
    edited March 2013

    Thanks to everyone for their replies.  I means so much to hear from other women going through this or who have goe through this.

    April - good luck on Tuesday.  I hope everything goes well and you get good results.  Thanks also for the numbers you cited. 

    Ballet12 - Glad to hear that your "gamble" paid off and that you got good results and were able keep your breast and to do radiation.

    Lolalee- There are so many choices to make at every turn of this journey but I agree with you - only you know what is best for you.

     I can easily see getting mastectomy or even bilateral mastectomies although part of me does want to avoid that for a number of reasons.  But alas - the journey continues and we shall see what happens after lumectomy #2.

  • dsj
    dsj Member Posts: 277
    edited March 2013

    Margins are one of the most complicated issues in the whole DCIS discussion.  (You can search and find lots of comments.)  Part of the issue is that there doesn't seem to be a standard way of treating and evaluating specimen tissue.  Also a lot of the research doesn't differentiate between close margins and wide margins.  I really tried to understand my margin issues, and I suggest you do too.  But in the end, I had unanimity of opinion among my doctors that my margins were okay, even though the margins seemed really narrow to me.  I actually wanted the second lumpectomy but I was eventually had to come to terms with the fact that no one (besides me) seemed to think I needed one.  I am now about over three years out and have had clean mammograms and breast exams since.  Good luck to you.  Going through all this decision-making is the worst part.   

  • Natters
    Natters Member Posts: 361
    edited March 2013

    Barb, my understanding was that as many as 20% of all lumpectomies in the US need re-excision. I wanted to avoid that so I asked my BS to take a lot of tissue, more than he thought he'd need, so I could avoid re-excision. I have fairly large breasts and had a relatively small amount of DCIS, so I could afford to say this. I know that's not the case for everyone. The BS actually seemed a little offended, like I was trying to tell him how to do his job. He said that 20% might be the national average, but was not the number for his group at that hospital. Still. I was glad that I had that talk with him before he cut and luckily I ended up with margins that were decent, if not wide. He may have been limited on the one side because it was near my chest wall.



    (1) I think they do find stuff during surgery that wasn't entirely evident in the tests. That's why they don't give us a real diagnosis until after surgery. And some people go from stage 0 to stage 1. Sounds like you are pure DCIS, just a little more than they initially though.



    (2) if the other breast was clear in the mammo and the MRI, then they are going to assume its ok. Do you have any other reason to suspect you might get BC? Do you have a strong family history? If so, I would consider genetic counseling before getting any more surgery, just so you have a better idea of your risk.

  • Denverbarb18
    Denverbarb18 Member Posts: 14
    edited March 2013

    Natters-I didgenetic testing and thankfully do not have braca mutation. The reason i worry about the other breast is because they found dcis thattbey did not know was there, did not see on mammo MRI or on exam. By that logic it could be all over the breast or even in the other one right??

  • Lolalee
    Lolalee Member Posts: 225
    edited March 2013

    There is an interesting explanation from Beesie which was so true in my case.  Beesie is very knowledgeable and has done a lot of research on DCIS and margins. (search Beesie).

    DCIS can run along a duct, skip and continue to run.  During lumpectomy the DCIS is removed with a good margin but where it has skipped it goes unnoticed and as in my case did not show on any of the scans.

    Of course if you go straight to Radiotherapy you would not know that this problem existed.  This could be one of the reasons why DCIS returns after Radiotherapy treatment.  The only reason mine was picked up was because I took extra time trying to decide between prone and normal position RX.  I asked for further tests because some time had elapsed since the lumpectomy. Lo and behold further DCIS was revealed.  Like I said had I gone to RX within the normal time of 3 - 6 weeks no one would have been any the wiser.

    I asked my BS what the outcome would have been.  He replied that RX may have taken care of it or it may have come back, no one knows for certain. I proceeded with UMX, only regret did not do BMX.

  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Just back with an update. My path report came back with pure DCIS which was great news. But, I have to have re-excision surgery on Monday due to ONE margin being <1 mm! Ugh...anyway, all other margins were quite large, the smallest being 6mm and the largest 3.2 cm! The posterior margin was the pesky one.

    Just thrilled the path report gave me no other hidden stuff...just the DCIS, Grade 2, cribriform and papillary that it said on initial biopsy.

    While re-excision is not the ideal, I think it is a small price to pay for peace of mind and of course the rads are supposed to take care of any cells it might have missed!

    Best to all!

  • Lolalee
    Lolalee Member Posts: 225
    edited March 2013

    Great news April that only DCIS was found.  The re-excision will hopefully give you better margins which will be a good thing.  All the best with the  surgery and RX.

  • Denverbarb18
    Denverbarb18 Member Posts: 14
    edited March 2013

    Great to hear your update April.  I hope they can get clean margins next time around.

    I just had my re-excision this morning and now just have to wait until Tues or Wed for results.  This procedure was much easier due to IV sedation rather than general.  Am a lot less foggy and actually remember talking to the surgeon afterwards.

  • windycityDCIS
    windycityDCIS Member Posts: 22
    edited March 2013

    HI Barb- Here's my "two cents" as a DCIS veteran who had BMX on Jan 7 (and i've done fine)  The difference between DCIS and a solid tumor is that there's no solid tumor visible on radiographs or to the surgeons eye.  In my case, they identified 2 areas of microcalcifications 4 CM apart, performed the stereotactic biopsy and both areas were positive for DCIS.  When they are that far apart, it is considered "diffuse" and there's a good likelihood that there's DCIS in other ducts in between.  As my breast surgeon said, "your ducts could be full of DCIS, but its still DCIS."  He also told me that ducts are microscopic- you could fit thousands into an area the size of a nickel..  At any rate, you are right that the concern is there are no visible markers to judge whether you've gotten clean margins.  So when it is diffuse, the concern is exactly what you hit on- that if you do a lumpectomy you end up going in again and again to remove more tissue to get clean margins.   

  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Windycity, that was a great explanation for Barb! Mine was not diffuse, it was a small area (5mm) concentrated in one area of my breast. I did get totally clean margins all around, but one of them is too small (<1mm) so I chose to go back in and shave more off. I could have just gone straight to rads according to the BS but HER recommendation is that I get that margin wider and I agree. Also, the RO wants nice big margins. Most of mine are more than a cm with one of them 6 mm except that one that is being made wider on Monday. I told the BS to make ALL of my margins bigger cause my bikini days are over since I am 57...lol She said she would make sure to give me a wide area. She did already in most of them as the largest was 3+ cms!

    Clearing those margins has to happen in about 20-40% of the cases cause as WindyCity said, these DCIS cells are microscopic. So tiny that it takes several years to show up on mammos or US's! They are like grains of salt my BS told me. My less than one mm margin is like a grain of rice in size so she wants to make it larger to be sure! I am all for it after the initial disappointment of having to go back in for more surgery but it is what it is.

    I hope that you ONLY have to have one re-excision! Hugs!

  • Denverbarb18
    Denverbarb18 Member Posts: 14
    edited March 2013

    Well unfortunately lumpectomy #2 did not get clean margins so now they are recommending mastectomy.  At this point, I have decided to do BMX but have yet to decide what kind of procedure to have.  Have lots of consultations with plastic surgeons and lots of reading to do.  Guess I now have to look in a different discussion board for more answers.

  • angielee
    angielee Member Posts: 24
    edited March 2013

    Hi Denverbarb1,

    I had the same results. Re-excision showed more than the original. I actually had a lump removed the first time so they focused on that but the margins weren't clean. This time she took s large amount of tissue and mire than half was DCIS, cribiform and papillary, grade 2. So mastectomy it is! I see plastics on Wednesday, clueless as to options at this point. BS said she feels I will need tissue expanders but that's all I know. Please keep me in the loop if you have any tips.



    Thanks,

    Angie

  • LAstar
    LAstar Member Posts: 1,574
    edited March 2013

    I'm so sorry you will both need MX.  I was going through this same process last year, and it was a big surprise.  The Breast Reconstruction Guidebook is a useful reference at this point.  I was able to borrow a copy from a BC organization at my hospital.  Each PS will only suggest the techniques that s/he performs. Ask to see photos (one of the PS I met with was so new in his practice that he didn't have any photos of his work -- um, no thanks).  If you think another reconstruction approach will be better for you, then you have to find the right PS for that technique. Then each PS usually works with a BS that performs the MX.  It helped me a lot to meet some local women and talk to them about their reconstruction and pros/cons.  I wish you both the best in finding the surgeons that give you the most peace of mind.  

  • april485
    april485 Member Posts: 3,257
    edited March 2013

    So sorry Angielee and Denverbarb...sigh. I get my results this Tues from my re-excision. Hoping the news is good but preparing for if they aren't. Hugs!

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