Correct treatment?

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Ellenida
Ellenida Member Posts: 9

Four months after wide excision lumpectomy,I finally have a diagnosis! Apparently a "challenging case". 

The experts say that as long as the whole thing has been excised with wide margins, that should be it.  The op was done by a young registrar & the consultant surgeon says that it has all gone -- the registrar told her she went down to the fascia on the chest wall.  However as my consultant did not do the op, how can I trust that this is indeed the case?  Initally the consultant was going to go in again and take a bit more but has decided not to bcos of what the registrar said.  I can't stop worrying that they should maybe go in again to make sure.  Please help!

Comments

  • Katey
    Katey Member Posts: 733
    edited February 2010

    I don't quite understand this.  You might feel better taking all your information to another breast surgeon specialist  or pathologist for a 2nd opinion!

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2010

    Excision alone is often an acceptable treatment for DCIS.  However, from the information you've provided, it's impossible to know if your situation is one in which excision alone might be okay.

    First of all, did you have a lumpectomy or a mastectomy?  Excision alone is more likely to be the recommended treatment for those who have a mastectomy.  For those who have a lumpectomy, it's all a question of the pathology.  Specifically: 

    • What was the size and grade of your DCIS?  Was it small & lower grade or large & higher grade?  Radiation is less likely to be recommended for those who have only a small amount of low grade DCIS. 
    • How large were the margins after surgery?  "Ideal" margins are 10mm or greater, on all sides.  With 10mm margins, radiation often is not considered necessary after a lumpectomy for DCIS.  But with smaller margins, radiation is more likely to be required. 

    Do you have a copy of the pathology report?  Information about the margins - which is the most important factor in this decision - should be included in the pathology report.

  • roseg
    roseg Member Posts: 3,133
    edited February 2010

    The surgeon, young or otherwise, doesn't know at the time if they got it all.

    Sometimes they'll send the sample to the pathologist on the spot while you're in the O/R and then take more tissue with that immediate report,  but usually they know by the results of the pathology, which is sent to the surgeon in a written report after the surgery.

    I agree with Bessie that if you have doubts your should request a copy of the pathology report for yourself. 

  • Ellenida
    Ellenida Member Posts: 9
    edited February 2010

    Hello girls,

    Thanks for getting back.  Yes, I have pathology reports - they were sent to 3 specialist expert pathologists after the hospital pathologists requested further opinions.  The recommendation came back from them that it must be excised completely but that assuming that happened, no further treatment would be necessary other than careful obs & annual mammos.

    The wide excision lumpectomy had large clear margins, but a posterior margin of only 1mm which extended back to chest wall, ie. they/it could go no further and my consultant said that is a "natural barrier". 

    What concerns me is that the op was done by a different surgeon from the consultant and so when she is discussing the procedure with me, she is doing it sort of 2nd hand!  The surgeon who operated is a general surgeon rather than a breast surgeon.  Following the recommendations by the pathologist experts, my consultant spoke to her to clarify that she had taken as much as she should and therefore could decide whether I needed further surgery. Gen. surgeon said yes she had gone right to chest wall - but as my consultant didn't actually do the op herself , we seem to be having to accept it at face value. 

    My consultant actually said the other surgeon "had no reason to lie" (!) which didn't really settle my mind!!!

  • redsox
    redsox Member Posts: 523
    edited February 2010

    A margin of 1 mm is small and would usually lead to consideration of radiation therapy or re-excision --- at least another consult would be good.

  • olivia218
    olivia218 Member Posts: 257
    edited February 2010

    Ellenida,

    I am sorry you have to go through all the confusion about what to do next. I tend to agree another opinion unrelated might be best.  I had a mx three weeks ago and margins are 1mm - noone is happy with that and so I have an appt in a few weeks with the oncologist to discuss my next step options.  

    Olivia 

  • ladyod
    ladyod Member Posts: 152
    edited February 2010

    What are good margins?

  • sweatyspice
    sweatyspice Member Posts: 922
    edited February 2010

    From what I've read, ideal margins are usually considered to be 1cm, good margins are 2mm. 

  • olivia218
    olivia218 Member Posts: 257
    edited February 2010

    If you read Beesie's post above she refers to 10mm as ideal margins all the way around.  Every time I look up margins on the Internet I can not find a direct answer - the answer is it depends on the hospital. That seems obnoxious to me, there has to be a average standard somewhere.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2010

    There have been lots of studies that show that with 10mm margins the recurrence risk after a lumpectomy will be very low, whatever the original diagnosis (grade, size of tumor, etc.).  So it's pretty much agreed that 10mm (or 1cm - same thing) is an "ideal" margin. 

    The inconsistencies relate to the definition of what is a "minimally acceptable margin".  Some doctors say that even a few cells is okay.  Others go with 1mm.  Most prefer 2mm or 3mm as the minimum.  There isn't agreement on minimum margin size simply because medical science isn't precise and the results aren't always the same when studies are done.  Often a 1mm margin will be perfectly fine and there won't be a recurrence but sometimes even those who have much larger margins end up having a recurrence.  It's not black and white and there is no clear answer.  Because of that, doctors use their judgement in this area, as they do in so many other areas of our treatment.  If a doctor has good experiences with small margins, he might say that 1mm is okay.  If another doctor has recently had a few patients who've had recurrences, he might err on the conservative side and suggest a re-excision for any margin that is less than 3mm. 

    Here is information about DCIS recurrence rates and margin size (and other pathological factors):

    http://www.breastdiseases.com/dcispath.htm

    http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2

  • dangergirl
    dangergirl Member Posts: 30
    edited March 2010

    It is difficult to understand for sure.  I was rejected by radiation oncology with a .5mm margin on a re-excision, and ended up with a mastectomy after that 2nd pathology stated multi-focal as well.  It's hard to understand how you get a bigger margin once you hit the chest wall, I also had a thin but barely acceptable margin in that direction myself.  Surgeon actually scooped right into my pec to get it.  My case eventually went to tumor board for a complete review.  After that I felt like I had the best possible recommendation, even though it wasn't what I wanted to hear.  Good luck. 

  • olivia218
    olivia218 Member Posts: 257
    edited March 2010

    Beesie,

    Thank you for the web links, they are informative. My appt is next week to find out next steps. It has been a nice break for me to have some time to heal before I found out if more surgery is necessary.  Radiation is not possible because I have lupus.  

  • Ellenida
    Ellenida Member Posts: 9
    edited March 2010

    What happens when the tumour is so close to the chest wall? That does sound really scary to me and mine was just that. That is the reason they said they couldn't get any wider margin in that direction but that the wall/fascia is a "natural barrier". What does that really mean?



    Also I do get quite a lot of twingey pains in that breast, but I know that DCIS and BC is not painful, does anyone know what causes this? The other breast doesn't seem to be affected so it really worries me.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited March 2010

    My bc surgeon said that wide margins are not always a guarantee against a recurrence. DCIS can jump around. After my first lumpectomy, I had very safe wide margins...one year later, another dx.

  • sweatyspice
    sweatyspice Member Posts: 922
    edited March 2010

    Ellenida -

    Did you have a lumpectomy on one breast?  If so, the twingy pains are probably nerves regenerating and healing.  It takes a while and it's normal and it's common.

    As far as the "natural barrier" is concerned, this is my guess:  if you had "pure" DCIS it would be in the breast ducts, which are in breast tissue.  Chest wall tissue is probably not the same as breast tissue, and chest wall tissue also wouldn't be connected to the breast ducts.

  • Ellenida
    Ellenida Member Posts: 9
    edited March 2010

    Thanks loads - that does make sense! think I just need to focus on the fact that I only needed a lumpectomy (wide excision) and be thankful. It's hard for it not to be the first thing that wings unwanted into my head the minute I open my eyes! I also feel really guilty for the truly awful thought that my lovely sister-in-law who had to have radiation, lymph nodr removal etc. far worse than me, would have found it easier to live with afterwards because she must feel "safer" having had more treatment. I know how awful that sounds and I should thank my lucky stars i didn't have to have radiotherapy. My God, how mixed up is my brain!!!

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