What about breast changes that are not yet DCIS?

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akinto
akinto Member Posts: 97
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I got the pathology back on my reexcision. (Not from the surgeon, but from the patient intranet.)

 My new margin minimum is only 3 mm. They found and removed another .75 cm hunk of DCIS. 

And then there was this

  "d) Remaining breast tissue showing fibrocystic changes,
columnar cell changes, focal florid ductal hyperplasia and
papillomatosis, focal papillary apocrine metaplasia, and
microcalcifications associated with benign ducts."

 What  should I worry about? How much?

 What should I ask my surgeon when I meet with him on Tuesday?

 I wanted 1 cm margins all around, and I don't have them. Should I be talking about another excision?

 With all this grungy stuff, should I be asking about a mastectomy?

Thanks, folks!

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  • akmom
    akmom Member Posts: 272
    edited May 2012

    Hi akinto, my pathology was almost identical to yours: columnar cell change, florid foci of usual ductal hyperplasia, papillomatosis, multiple radial scars, apocrine change.

    Unfortunately with all the focus on DCIS and treatment, I keep forgetting to ask about the "grungy stuff" so can't help you out with that.

    My margins were only 2mm but both the surgeon and oncologist seemed quite happy with that. How did you arrive at 1 cm as a margin you would be comfortable with?

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  • juliet62
    juliet62 Member Posts: 3,412
    edited May 2012

    had a stereotactic in dec which adh was found, the wire guided biopsy in april found alh, both ro/bs basically said the same thing, busy breast ,cont with the 6 month mammograms and checkups, 

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  • akinto
    akinto Member Posts: 97
    edited May 2012

    I had a good chat with the surgeon yesterday.

     He said that the other stuff going on in my breast, in the absence of DCIS, would be cause for concern and more vigilance.

     However, because I have now had DCIS, the way in which my risk is determined is governed by the DCIS. The other crap, even if it is still in my breast, is of far less concern than the DCIS.

     The only way to reduce the risk from the still benign stuff would be a mastectomy. And he thought that was basically an over the top alarmist response.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2012

    If it is any relief to you, I had 3 lumpies (had 2, they said I had clear margins) and then the RO pulled a mamo before starting my radiation treatments,

    he found more DCIS in a slightly dif location

    despite the confusion initially, I am now 4 years out, nothing found since and really all clear.

    I think that DCIS is harder to deal with than a lump...then again, I have DD so lots to work with

    course my next mamo is next month so will keep my fingers crossed

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  • akinto
    akinto Member Posts: 97
    edited May 2012

    What does pulled a mammo mean? Ordered one? Looked at an old one?

     My surgeon is pretty confident that he got everything that was on the mammogram, that other forms of imaging are really unreliable, and that the type of DCIS I have had is easier to find through X-rays.

     

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  • LAstar
    LAstar Member Posts: 1,574
    edited May 2012

    Did you get an MRI?  It was very helpful for me to determine the extent of the high-grade DCIS.  The MRI picked a large area of high-grade DCIS that had not yet calcified so it didn't show up on my mammo.  MRI may not help if all that is left is "grungy stuff."

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  • akinto
    akinto Member Posts: 97
    edited May 2012

    My surgeon said that MRIs were really unreliable, that he would still have to do a biopsy of half my breast after getting one. He felt that mammography would be the best kind of imaging for me.

     I can ask my RO, but I have a hunch no one wants to do one.

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  • LAstar
    LAstar Member Posts: 1,574
    edited May 2012

    My BS said the same thing, and my MO and radiologist didn't recommend an MRI either but I insisted.  My re-excision verified that the linear patterns in the MRI were in fact DCIS.  My impression was that the radiologist who initially did my biopsy was the one who should have ordered an MRI.  

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  • akinto
    akinto Member Posts: 97
    edited May 2012

    Well, I have begged and begged my surgeon and the nurse navigator. No one thinks it's a good idea.

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  • LAstar
    LAstar Member Posts: 1,574
    edited May 2012

    Frustrating!

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  • juliet62
    juliet62 Member Posts: 3,412
    edited May 2012

    i had a mri after new califications found on mammo,  the mri showed nothing but the califications but the stereotactic showed adh, various test can illuminate different things !

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