DCIS without radiation or medication

lawoman728
lawoman728 Member Posts: 2

I was dx with DCIS on 11/12/09 and had a lumpectomy on 11/18/09. The path report came back the next week that showed my margins weren't clear. Had a reexcision on 12/10/09. The path report came back (see details below) with clearn margins and my surgeon said I don't need rads or medication because it was small and the margins are clear. He said to "watch it like a hawk" because of the nature of DCIS and that it could turn invasive and that I should come back for a 6 month mammo. I've been reading so much that now I am confused because so many people with DCIS have radiation. And what is an acceptable clear margin?

On the path report it states a section called "Premious Diagnosis on File" - I'm guessing this is from my original lumpectomy. The size here states "Isolated foci of DCIS, largest maximally spans 2mm (block 10). DCIS is present at the suprerior margins towards deep spanning. 5mm and is .3mm from the medial margin superficially."

After the reexcision, the size states "Isolated scattered ducts individually measuring up to 3mm and spanning an area estimated to be 1.0-1.5cm. The closest margin .8 mm from inferior aspect of lateral margin and 1.5mm from inferior margin."

Then what concerns me is the section called Microscopic Description that says "residual dcis" is also seen adjacent to the inferior and lateral margins."  Does that mean they got it with the re-excision or is it still there.

Does this sound right? I don't understand lateral, deep, inferior margins. It sounds like my DCIS is small? Is it? Again, does it sound like the margins are okay. Should I get a second opinion to see if Radiation would help? I would prefer not to have it if I don't need it, but would prefer to minimize a recurrance. I trust my doctor, I just am scared and want to do the right thing. I should never got a copy of my path report as I felt better just listening to the doctor - but everyone said you should have a copy of it.

 Thanks for any help you can offer.

Comments

  • lawoman728
    lawoman728 Member Posts: 2
    edited December 2009

    P.S. My ER/PR were both positive. ER >95% of tumor nuclei, PR 50% of tumor nuclei. I understand the ER/PR, but don't get the percentages.

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2009

    lawoman728

    Poor you, how confusing.  I only know for sure - anterior - which is the side closest to the surface. the pathologist is indicating the surfaces of the tumor as it related to your body? anyway, It sounds like you had/have more than one tiny area of DCIS. and it sounds like your margins are still not that great. 1cm is really, really good that would be 10mm. 2mm is often considered acceptable. my smallest margin was 1.5mm anterior, and I got extra radiation instead of a re-excision. Here is a url for a discussion of the Van Nuys Index, a helpful tool for deciding whether to have radiation or mastectomy. http://docs.google.com/viewer?a=v&q=cache:8AC3wJZlL_oJ:medschool.umaryland.edu/surgery/general/resident/website/docs/articles/surgical_oncology/van%20Nuys.pdf+van+nuys+dcis&hl=en&gl=us&sig=AHIEtbQQ0qKPrgwCUqCQ0nK7kyG36Tinjg  If this doesn't work, just google van nuys dcis and you will find this and other urls. I think you should follow through on a second opinion. It is always a good idea.  Your ER and PR are pretty much like mine, I think of it as very ER responsive and not so much PR responsive. I am taking the tamoxifen as recommended to me.

    Julie E 

  • SJW1
    SJW1 Member Posts: 244
    edited December 2009

    I was diagnosed with DCIS in 2007 and chose not to have radiation based on the Van Nuys Prognostic Index and a consult with a world renowned pathologist and DCIS expert, Dr. Michael Lagios. He has a breast consultation second opinion service you can check out at breastcancerconsultdr.com or just google his name.

    I knew I did not want radiation unless it was abolutely necessary. Having him review my pathology slides and talking to him gave me the confidence I needed to make that decision.

    If you would like more details about him or why I decided to omit radiation, please send me a private message. 

    Either way, it IS a tough decision, so I wish you all the best.

    Sandie

  • redsox
    redsox Member Posts: 523
    edited December 2009

    You would be likely to get different recommendations from different doctors because the margins are questionable.  Mine were similar to yours -- no obvious place to go back and excise more tissue but no assurance that no cancer cells were still there.  A consult with a radiation oncologist would be a good idea. 

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