Positive margins ... radiation or not?

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I am trying to locate others who have had a mastectomy with positive superficial margins under the skin and what they decided on Radiation Therapy.  There don't seem to be many studies on this.  Within my DCIS 3.5 cm tumor, there was a focal area of 4mm of Invasive Ductal Carcinoma, but the margins were wide on that.  It's the DCIS that, even with closer excision by my surgeon during surgery, was within 2mm of the superfical margin.  My surgeon says he scraped my skin as close as he could get and compared it to taking wallpaper off a wall.  He says he got 99.9% of it, but referred me to the Radiation Oncologist for his opinion.  Has anyone had a similar case?

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2012

    Bumping for KATHL33N...  I had RT due to a close, unspecified margin, but it wasn't DCIS.  But I also got the opinion of 3 different rad oncs before deciding what to do, so you might want to consider getting more than one opinion, too.  Good luck!    Deanna

  • jenn333
    jenn333 Member Posts: 178
    edited March 2012

    I didn't have DCIS but for what it's worth, after my mastectomy I had to have a reexcision to get clean margins.  Even though we got clean margins on the reexcission, my RO recommended radiation for the margins reason as well as the fact that I was multi-focal and no-one really knows what weight to put on overall tumor load.  I decided to have the radiation out of an abundance of caution.  I did not have to have chemotherapy. 

    Now that I'm a couple of months out from rads my personal feeling is that it may have been overkill but I don't regret being aggressive. 

    Good luck. 

  • KATHL33N
    KATHL33N Member Posts: 6
    edited March 2012
    Thanks, Ladies.  I have gotten three different opinions from Radiation Oncologists ... one says no, one says maybe, and the other says yes.  Undecided  I don't want to overtreat, but certainly don't want to undertreat ... this is so difficult. 
  • jenn333
    jenn333 Member Posts: 178
    edited March 2012

    Well isn't that just perfect!  So sorry you don't have clarity on this.  Are your RO's at a nationally accredited cancer center (can't remember the official designation - something like NCI)?  If not, maybe get an opinion from an RO from such a facility?

    Best of luck.  These are not easy decisions. 

  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited March 2012

    A 2 mm margin would be considered a margin at some cancer centers.  I had a question like that many years ago....I had a 1 mm margin for DCIS but it was a margin. My first cancer center said that I did not have enough of a margin and needed radiation; the second and third ones said it was a margin and one rads onc actually personally looked at the slides and went over them with me.  In the end (26 years ago), I did not have radiation and I have not had a recurrence of that cancer (unfortunately, I got an entirely new and different cancer after 23 years but radiation would not have prevented it). The reason your doctors have different opinions is because everyone sees a slide a little differently and some cancer centers want larger margins than others do.  I would get another opinion since you basically have two opposing opinions and one doc with no opinion.  All the best.

    Hugs!

    Mandy

  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2012

    KATHL, what a tough decision!  At least I had 3 "yesses," even though I kept searching for a "no" besides my MO, whose opinion I didn't trust for RT.  But to get a "yes," "no," and a "maybe."  Boy, that's confusing!

    Have any of your opinions been from the Mayo or the UofA?  They're both NCI-designated (the only ones AZ), so I would tend to value their opinion above others.  If you have, and if it's the "maybe," then I think you're faced with a risk tolerance/peace of mind decision, more than a clear cut "right" choice.  It's whatever you can decide and live with without regrets, either way.

    My only other advice is not to feel rushed into making a decision.  Give yourself more time to decide, but don't try to analyze it or dwell on it.  Let your subconscious work on it for you, and I'll bet you'll make the right decision for you.  The other thing you could do, since opinions are so split -- and especially if you haven't been to The Mayo or UofA, is get a 4th opinion.  Sometimes it's not even the opinion itself (because it could be another "maybe"), but just some little tidbit of information or the way someone explains something you didn't previously understand that makes it all just crystalize in your mind.

    Good luck ~ And keep us posted on what you decide to do!   (((Hugs)))  Deanna 

  • PhunkyM
    PhunkyM Member Posts: 49
    edited March 2012

    I questioned whether radiation was the right choice for me too, but my RO explained it very well. I have three indicators that pointed to the need for radiation: my age (35), positive margin, and grade 3 tumor. I felt sure that chemo killed everything in my body, but she explained that the targeted therapy of radiation brought my chance of recurrence way down.



    For me it came down to hoping that I never have to do this again.

  • AmyLD
    AmyLD Member Posts: 4
    edited March 2012

    I agree!  I also had three indicators ... age (52), grade 2 and necrosis.  My RO explained that had the necrosis not been present he could positively state that there was no need for RT.  But, because it was present I should treat.  Who knows if the calcifications decide to party elsewhere in the breast.  I felt better safe than sorry and do not want to go this this again as well.

  • chatsworthgirl
    chatsworthgirl Member Posts: 288
    edited March 2012

    Kathleen,  I left you a private message regarding my own struggle with this decision.  I had mastectomy as well and got conflicting suggestions.  I didn't want to post here because it was rather lengthy.

    I had a 2mm margin to the chest wall and that was considered a good clearance.

    Kathy

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