Still confused about DCIS

pattimay

My pathology report still has not come in after being sent out because they were "on the fence" after my excisional surgery last monday.  My doctor told me yesterday at followup appt. that he could not get clean margins since I had so much atypia.  He took already 25% of breast and I'm only a B cup at best.  He showed me a paper with pictures of the difference between normal cells in the duct going to atypical ductal hyperplasia and then DCIS.  I'm inbetween the ADH and DCIS.  After reading and understand more I still don't understand if determining DCIS is finding cancer cells or just having alot of abnormal cells. Why did the report have to go to pathologists in another state to figure out if these cells are cancer? Why would the surgeon want to do a mastecotomy if it's just hyperplasia?  Is the only things that seperates DCIS and ADH the amount of atypical cells in duct??? Thank you ladies for being there. 

baywatcher

Patti-

Just wondering how you found your DCIS/ADH? Was it from a mammogram?

I'm sorry that no one has answered you yet but you can find a lot of info by just searching this site. I am sure that someone else will respond that is more helpful than I am.

Just over 5 years ago I lost my first breast to DCIS. Now, the more that I read the more I am convinced that DCIS is over treated and in many cases will not cause problems if left untreated. I also think that the treatment is worse than the disease. 

I don't have answers for you but I suggest that you do as much research as possible and not just trust the doctors.You must be your own advocate. 

Good luck to you.

debintn749

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

baywatcher

Hi Deb-

I didn't do recon and may pathology wasn't strong ER+ so I didn't need tamoxifen. How about you?

Amain

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.

CrunchyPoodleMama

pattimay, I'm in a similar situation other than mine is pure DCIS (from what I've been told). My doctor is recommending mastectomy at this point since, like you, he took a large chunk of it already.

Amain, I like your perspective. I had a lumpectomy but two margins were not clear... so now my surgeon wants to do mastectomy with reconstruction. I don't want to go through all that and am thinking of just NOT doing it (but "self-treating" full-force with a good anti-cancer diet and lifestyle -- not need to take crazy chances and keep consuming garbage!).

redspark3

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! 

RegulJ

The way I understand DCIS is that although the cells are abnormal and can be left alone, there is a possibility of the changing/migrating into something/somewhere else and turing into a true "cancer".

The fix for DCIS is mastectomy and this is the route I chose. Hard to deal with, but I am better off because of it.