is 1mm enough margin?

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zha-an
zha-an Member Posts: 31
edited October 2014 in Diagnosed and Waiting for Test Results

hi everyone

finally got final pathology report from last weeks re-excision of my lumpectomy site and sentinel node biopsy. The sentinel node was negative! Wahoo and what a relief however the medial margin is only 1mm from a 5.8mm focal DCIS and .5mm from hyperplasia area. This medial margin was also the most involved on original pathology report.  my surgeon removed an additional 1.7cm of tissue from this area so I am very concerned that a 1mm margin isn't enough!

another odd, but good thing...original pathology showed IDC on 3 other margins but the re-excision pathology shows clear tissue with no IDC on all 3 this time. Guess I'm a bit confused on how 3 margins could be compromised before with IDC but be absolutely normal this time. Not trying to borrow trouble mind you.. But since the tissue samples sent this time contained the "IDC compromised" margins from before how could the sample be completely clear now. Shouldn't their have been some IDC at the beginning of the sample and then a clear margin? I'm concerned that either it was a false positive before or was missed this time. How could it just disappear? The first pathology report was poorly written and both my BS and RO were confused by it regarding the tumor size so I don't have the highest confidence in the reporting pathologist!

any thoughts on either of these issues? Shd I try for a wider margin? I probably won't hear back from my surgeon until Monday as he does surgery all day today and this is stressing me out!  

thanks for listening! I hope we all have beauty in our day today... 

zha-an

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited October 2014

    zha-an, wow, that is confusing! I had a small margin of 5mm, but no re-excision was recommended. I have seen new studies that suggest the size of margin is really not as important as it was once thought to be. A clear margin is a clear margin, period. Who knows? You can always get a couple of opinions. Do whatever gives you the most peace of mind and least anxiety. Best wishes. Hard decisions. 

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  • april485
    april485 Member Posts: 3,257
    edited October 2014

    I had a 1mm margin in one area and my BS did a re-excision on advice of radiologist oncologist cause margins are VERY important in terms of recurrence. The larger, the better. As for your other issue, if I were you, I would send my pathology out for another opinion. There is an amazing pathologist in San Francisco named Dr. Lagios who is an expert in the field. Here is his website. http://www.breastcancerconsultdr.com/

     He can examine your specimen and give you a report. It cost 600 bucks but includes quite a bit including a phone consult. Or, you could send it to one of the better NCI cancer centers like Dana Farber. I would not be confident if they told me I had IDC and then I didn't? Just me maybe but I would definitely want it checked out by an independent source.

    Wishing you the best whatever you decide and hope you get some answers!

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  • zha-an
    zha-an Member Posts: 31
    edited October 2014

    thank you ladies for taking time to share your wisdom and experience... 

    I emailed my surgeon's office middle of night (sleep just isn't happening) and office mgr responded to let me know that my doc was out of town but that she called him and he wants to see me Mon. I'm thinking that another excision is in my future and I'm ok with that since radiation may have to wait until spring if things don't start happening soon. I live 75minutes from the cancer center and doing a daily drive in winter fog or snow wdnt be safe. I am applying for financial aid from a local group that might help me stay close to the center during the week so hopefully it will all work out like it shd! 

    the nurse told me that it is likely that the lumpectomy got all of the IDC noted in the inked margins and that's why no sign of it in this re-excision tissues. I plan to get clarification on Monday. If any questions then I will try and get another opinion but need insurance to pay as I have few financial resources. I am also in the process of changing oncologists. The one I see now is much closer to my home but has stubbornly refused to order oncotype testing and has been sure that my cancer is more advanced than any of my other docs. I asked my primary for her opinion as I trust her and her response was "I have sent a stat referral to Dr X". Figure that said it all! While I will hv a longer drive I will be at same large institute as my RO, whom I really like. Everyone will hv access to my electronic chart...no more faxing to this Dr or that Dr so I think I'll have better continuity of care. Plus I will have the benefit of the institute's tumor board rather than just one opinion on best Tx .

    I've only seen the current oncologist once and his NP once and both times I felt unheard. Both refused to do Oncotype test unless my SNB came back clear even though as a post menopausal, Er,Pr+(99%..)her2 negative tumor I met testing criteria even if SNB was positive. I also made it clear that I won't consider chemo UNLESS My oncotype showed a benefit that exceeded risk. I have an underlying neurological condition that would make chemo even more dangerous than it can be for us all. Still, they wdnt order and now it will be weeks before I get that info. Have to fight cancer...shouldn't have to fight my oncologist! That's my story and I'm sticking to it!!! Thanks for letting me vent.

    I'll post Mon after I meet w surgeon.

    hope everyone has a good weekend

    zha-an

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    This article makes it look as if the 1mm mark is OK to some docs and not OK for others.  Seems like it's a bit of a dividing line. I didn't read the entire thing.

    http://connection.asco.org/Magazine/Article/id/3404/Surgical-Margins-for-Breast-Cancer.aspx


     

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited October 2014

    hmmmm interesting one of my margins is .8 mm and it was considered clear.  There was another poster who had a margin of .4 mm also considered clear.  Not sure why there are differing definitions of what is clear.

    Nancy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    I didn't know anything about cancer when I was diagnosed and treated. I came late to research at the BCO (a nurse recommended it to me).  I'd already decided on a mastectomy (to avoid a 2nd surgery if "they didn't get everything," and to avoid radiation). For some reason, an MRI was done right before the surgery (to locate the tumor, which I thought odd since I was having a mastectomy).  Turns out it was a good idea anyway because there was a second primary tumor "close to but not touching" the chest wall.  I remember my surgeon saying "we got good margins," but not giving any type of number. She later told me that she had to "scrape the chest wall." Blech.  I think I'm glad not to have known any of this before it all went down.  So - I don't have a number; I just trusted her to have done her best. 

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  • zha-an
    zha-an Member Posts: 31
    edited October 2014

    interesting articles whatnot...guess I'll know more tomorrow afternoon after meeting w my surgeon. The cosmetic result is not an issue at this point since it already looks like cr*p. I had an especially ugly reaction to the dye used for the SNB...i now hv a 4" diameter circle of hard tissue surrounded by tissue that was first inflammed but is now broken capillaries (pettechia?) also we've taken so much tissue & part of areola after it died from retractor injury....poor girl hangs considerably lower than her droopy counterpart! Sooo already will need some fluff & stuff plus tattooing once radiation is completed.... I'll post once I know our next step and reason for it.

    also...did anyone else experience dramatic swelling after SNB? I didn't hv any after lumpectomy but re-excision w SNB (1 node) has resulted in a breast twice its normal size! Yipes! Now I know what my larger breasted warriors go thru! Because of a 4 hr post op I didn't get my compressing sports bra on to help keep swelling down. Anyone hv ideas on what has worked for you? If I hv another excision I will ask surgeon to order bra on as soon as I come too! Sucks that we learn things the hard way... 

    I am also dealing w an apparent hematoma since Thursday nite...obvious bruising that has been growing since then and severe pain since Saturday afternoon. My PA said to get US and possible drainage when I see surgeon tomorrow, especially if we don't go back in. I have an underlying genetic tissue disorder that makes my tissues more fragile so guess that increases my risk. I also had a large seroma/hematoma w lumpectomy that was dealt w during 2nd surgery. The fun just keeps on coming doesn't it!

    anyhow dear sojourners on this wild ride...thanks for being so supportive and letting me vent. BTW I meet my new oncologist Wed afternoon via a telemedicine appointment. That way I only hv to drive 25 miles ea way instead of 65! My PA said the new doc is great and that I'll get great,supportive care from her! And she WILL Order the Oncotype testing ...things are looking up.   

    zha-an

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  • Janet456
    Janet456 Member Posts: 507
    edited October 2014

    My closest margin was 3mm, my hospital seemed to be thrilled with that since they consider 1mm to be clear. xx

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