Still confused about DCIS

baywatcher- I too had simple mast for extensice dcis- r u taking tamoxifen? Recon?

I had a very small area of DCIS and a needle biopsy in Oct. and wide excision 2 weeks ago.  I had clean margins; the spot of DCIS was 2mm in diameter but the amount of tissue removed was 6 cm x 3cm x 2xm.  Seems like a lot for a tiny speak of microcalcifications.  I agree with Baymatcher.  After much research and dicussion with breast cancer researchers, the top people in the field of DCIS study, I have chosen not to undergo additional treatment like tamoxifen and radiation.  I believe, as baywatcher mentioned, that treatment for this, as yet under-understood disease, is far worse than the disease itself.  Why put all these toxins in an otherwise healthy body when there is not compounding reason (like family history of cancer) to justify it?  It's called CYA.  My opinion is this:  until I have a REAL cancer tumor, I'm not doing anything more.  If I get a real cancer tumor, then double masectomy immediately.  DCIS is the new "in" disease...something that isn't even proven to be cancer yet all the medical community wants to treat it like it is.  Not to diminish those that have suffered invasive cancers, but an "in situ" diagnosis means just that, it's "in it's place" and probably won't become invasive.  Until it does, no way, no how am I going to pollute my body with known toxins like radiation or tamoxifen.  Yes, you must be your own advocate and make a decision that you are comfortable with.  I saw a specialist at the Mayo Clinic and she said, "take it out and forget about it".  That's what I did and I"m sticking to the decision.

Hi Pattimay,

I had somewhat of a similiar experience. Mine was also sent off to an expert in the field to decipher whether or not it was adh with my atypical papilloma or dcis. It ended up being dcis. And, yes, as I understand it, it is about how much is atypia there is. If you search for dcis, there are a few websites that will help explain the percentages that decipher whether it being dcis or adh.

As far as the others say, I personally feel that it was best for me to go forward with the treatment that I had. First, I was told that a lumpectomy and 6 weeks or rads, then it was they couldn't get clear margins so a mx with no rads. Yay! Except that after my mx, i was told I would need rads anyway b/c my margins on my chest wall were not so good. I went and got a second opinion b/c I really did not want radiation. But, in the end, I had it b/c I didn't like the alternative. And, I do believe that mine would have gone invasive. I was young and I had bad margins - two things that  upped my chances of recurrence.

And now, it's been almost 4 years since my dx and so far, so good. And, I hope that it will stay that way. But overtreated, I was not! 

Best of luck to you!