Living with DCIS?

Hi there and welcome to the club no one wants to join!

From my understanding there are two problems with deciding to live with DCIS, which is why it is almost always removed.   First, there is no way to be sure until it has been removed and examined that there isn't also more invasive cancer hiding within the DCIS - there is no imaging that can reliably tell that without any doubt.    The other problem, is it is impossible to tell via imaging whether the DCIS has begun to mutate it's way towards becoming IDC, so even if it is known to be DCIS at one point, you don't know when/if it is going to change or if it already has without your knowledge.   In other words it's not living with DCIS that is the problem, it's that you can't be sure that you are only living with DCIS until it has been surgically removed and examined under a microscope.

Hi bcdupree. 

As someone who has been diagnosed with DCIS 3 times over 20 years, I know exactly what you're talking about. MX seems so extreme for something that can't kill you. Yet, waiting around to see if it may turn into something that can kill you seems unwise. There was 17 years between my first & second DCIS (2 different breasts). As far as I can tell, during that time, there was no real advancement in determining which cases would turn invasive. There was some new thought that DCIS, maybe did not have to be treated, especially if it was low grade.

My 3rd DCIS, I guess was a return of the 2nd. Who knows. I about went crazy waiting for the biopsy results knowing it could be invasive. I wasn't given a choice this time of lump or MX, since a second radiation wasn't available. I also decided to remove the good breast (well it had behaved for 20 years). It still seems extreme to me that I removed my breast for DCIS, yet I'm glad I did. 

I don't really have an answer for you, but just wanted to say I sure can relate. 

Alice

Hi Sweetie - Please be diligent.  I had stereotactic biopsy results of low-grade DCIS; upon lumpectomy found grade 1 an 2, still considered low, as there was no necrosis, and yet there was a (maybe two) microinvasion of low-grade invasive cancer in there.  I'd felt I had a "knowing" that my DCIS wasn't "moving" (wrong).  I had also considered not treating the DCIS, not having rads, thinking most low-grade DCIS (maybe 80%?) does not go on to change to IDC.  I was surprised that a micro was found within my low-grade DCIS, as I heard and presumed that usually came out of an aggressive, necrotic grade 3 DCIS.  I consulted Dr. Michael Lagios, the 40-year world expert on DCIS (I suggest you do the same; $635; it's worth it) and he told me IDC happens all the time out of a low-grade DCIS.  I don't want to frighten you, but I do want you to be safe.  It frustrated the hell out of me, but it simply cannot yet be predicted which women will have their DCIS stay the same, and which will change to IDC.  They are having trouble determining that because a good study can't really be done, because almost no one chooses to do nothing. xx

WOT - Is any doc saying that the side that's been radiated will have a hard time with reconstruction after Mx?  That's what I was told.  Not that it is imposible, but that it is more difficult.

Please tell me.  What is a DIEP?  Not silicone (which doesn't move), not saline (which moves better)?  I don't have much fat anywhere else.  Sorry to be so stupid, but I'm not yet (hopefully never) at the reconstruction stage yet.  Though, with the way this can recur, I want to know all I can.  Right now, the worst has happend. After flying through surgery, skin effects great after rads, I now see that 3 wks after rads, the treated side is about two-thirds as big as the other side, and noticeably higher.  Shrinkage; and I wonder, if this much so soon, is more to follow?  I don't even know WHAT treatment there is to the treated rads breast for substantial shrinkage.  I am heartbroken that such a low-grade thing has changed me so much, so soon.  And I'm in really good shape.  Just crying, now.

Percy, I sent you a pm.

hi Alice,

I'm so happy to read your post as I was about to open a thread myself trying to find ladies with an older history of dcis/surgery/radiations ,fears,etc....and here I find your interesting post...I'm 42 years old was diagnosed on August 2013 with dcis ,and since you can imagine how my world has became..i did my lumpectomy and did 5 weeks radiations. Finished in dec 2013 and had the worst reaction ever that a patient can have to radiations. I was burnt and hurt a lot. The worst pain I experienced in my life...anyways the burn is gone. However I always have sore breast and sore armpit...my dcis at the biopsies was grade 3 with comdeonecrosis.however after lumpectomy the pathology showed I have intermediate dcis..now I am just living anxiety on a daily basis,fears of recurrence,etc...I have 2 young kids 6 and 9..life has changed a lot since my diagnosis..I feel sad most of the time..would you please explain to me more and in details your experience ? Did you have any side effects from radiations after all these years ? As it worry me a lot...did the dcis came back to the same breast(sorry I got confused a bit here with your story)...even though I'm ER/PR high positive my oncologist said I won't need tamoxifen as  side effects outweigh the benefits...can dcis metastize?? I live in worries every day wondering if I will live long enough to see my kids all grown ups..

Please any detail or sharing your opinion would be greatly appreciated...thank you..

Hope,

DCIS cannot metastasize. It cannot kill you. If left in your breast it could turn into a cancer that could metastasize. Go to the top of this forum & read the thread, "A Layperson's Guide to DCIS".

I also was 42 & just like you I had a lumpectomy & radiation. This was in my right breast. It never returned & the MX pathology this year, 20 years later, found nothing.

When I was 60 I had DCIS in my left breast & had a lumpectomy & radiation. 2 years later I had more DCIS in this left breast. I had a BMX & the pathology found only DCIS, nothing invasive.

I don't think they had tamoxifen 20 years ago & I chose not to take it 2 years ago. I had an easy time with radiation. 

I never missed a mammogram. 

If you'd like to know anything else, please ask. 

Alice

Hope,

They can do radiation to any part of the body that has not been radiated before. There are several women here who have had radiation treatment to both breasts. I have had pelvic radiation as well as radiation to both breasts.