I was diagnosed with noninvasive DCIS in March.  I have chosen to monitor.  I was astounded by the contradictions and confusion that exists on this issue.  Frankly, I think they are all just guessing.  One thing is clear: many of these Stage 0 (note the "0") precancers are grossly overtreated.  I resented the scare tactics used on me.  I was threatened with a mastectomy if I didn't do what they said.  Mastectomy!  For what?  For a tiny precancerous area that was nonaggressive? I did tons and tons of research and am following my own gut on this one.  I don't want to have any regrets down the line.  

Marjorie

A related discussion, new DCIS diagnosis was started.

I was diagnosed with DCIS (Ductal Carcinoma in situ, stage 0, non-invasive with calcifications clustered behind the left nipple) in June of this year.  I had a wire/needle biopsy and lumpectomy but didn't get clear margins.  I then talked to my breast specialist who did not seem too optimistic.  He would not tell me what he thought I ought to do...whether I should have a mastectomy or just a lumpectomy and radiation.  I wanted to know what he would have a daughter or a wife do in my situation.  Because he couldn't advise me, I sought a second opinion and this breast specialist was very optimistic and said that I was 100% curable and he wanted me to try to have one more lumpectomy and wire/needle biopsy.  I did and got clear margins.  The first doctor wanted to do the Sentinel Node testing and this second one said I didn't need to.  So, I prayed that I would make the right decision and I decided to just have the lumpectomy followed by radiation treatments.  I had no problems with rads.  I am just fine.  I finished 7 weeks of it (25 treatments to the entire breast and 8 boosts directly to the incision area) and now await my next appointment with the Medical Onc.  I don't know whether they'll put me on Tamoxifen or Evista or whether they'll even suggest me taking anything.  After reading the comments about Tamoxifen and the side effects, I'm not sure I want to take it anyway.  My maternal grandmother died of bc at the age of 54.  I will be 53 in December.  My mother never had problems.  I also have two paternal aunts who had it.  After a hysterectomy two years ago, the Gynecologist put me on Estrogen.  I always will believe that the Eetrogen contributed to the bc.  They say no, but they stopped it cold-turkey in June when I was diagnosed and I've had a lot of problems with depression.  I tried Effexor...a low dosage and got so sick after one pill.  So, I'm going to ask the Onc about SAM-E for depression, CO-Q10 and other meds.  I'm just hoping and praying that this bc doesn't come back.  I will have regular follow-ups.  They say that I will be just fine.  I am really happy that I got the radiation treatments.  At least, I do feel that I have some sort of protection against it coming back!  They say if it does come back, I will have to have a mastectomy.  Sorry this is so long!

If you read my post you should notice I mentioned Extensive DCIS....meaning it was in ducts throughout my breast-even more so than thought as it turns out from the path report....also turns out there was a small beginning of micro-invasion in the post-surgical path report.    My surgeon said that I would have been in real trouble had a couple years passed.  

DCIS can be effectively treated if localized with lumpectomy and radiation.  I really didn't have a choice....though I knew I didn't want radiation so was planning for mastectomy anyway.

Yes, it's true that not all DCIS goes onto to become invasive cancer, but some does, particularly when the comedo type.  I have a four year old daughter and you know what....I didn't really care about losing the breast (I had one-stage reconstruction with saline implant on 9/16)....I wanted to the cancer, pre-cancer, all of it gone.  My sentinel node biopsy was clean so I feel fortunate.    

I've recovered well...still tired, but have full mobility in my arm and little discomfort.  Not to say mastectomy/reconstruction is the best choice for everyone, but I know, and my surgeon confirms, that it was the right choice for me.  It is confusing and scary to read about DCIS, but I suggest anyone who is so diagnosed finds out what grade of DCIS....and even get more than one opinion--I am lucky to live in San Francisco and have had access to some excellent care....take care all.

Following chemo for my breast cancer, I was thrown into early menopause and suffered similarly from horrendous hot flashes.  After 2 weeks of hardly sleeping, I spoke with one of my oncologists who put me on a very, very low dose of time release Effexor, an anti-depressant. The hotflashes stopped soon after beginning the medication.  After 6 months on it, my doctors took me off due to concern about potential effects on the liver.  I now get occasional hot flashes but nothing like those two weeks last fall!  You may want to consider trying it....and don't worry about it being an anti-depressant, the dosage is so low that you really don't get the anti-depressant effect that higher doses provide. Good luck!

I have to agree with 123123 on this subject!  She is right.  If DCIS is contained in the duct and has not broken through the lining of the duct - then why do they take the whole breast?  Since this is NOT cancer, shouldn't they just take the affected duct and leave the rest of the breast alone.  Remember now, DCIS is not invasive.  Doctors can take out the ducts for benign reasons so why not for DCIS.  If DCIS is not cancer then why are doctors treating it as such.  DCIS patients go through the same mental anguish, surgery, radiation, and then prescribed Tamoxifen for 5 years.  Why do DCIS patients have Oncologists?  I do feel that DCIS is the begining of the invasive breast cancer. I feel that DCIS should be atleast at stage 1.

Some doctors do call DCIS early stage breast cancer.  I specifically ask when they called with my dx.  Since then I have been to 2 onc., family doc, Indy Breast Center, surgeon, PS.  It has always been referred to as cancer but I have also read books where it isn't.

It can indeed become invasive--I had microinvasive DCIS.  Better to deal with it early than wait.  You can have excision and radiation, but with extensive disease, it may crop up in another are of the breast that was not irradiated. They can't irradiate the whole breast.

When I was diagnosed the doctor said I had "cancer of the mammary ducts and it was aggressive and extensive" (path report after the lumpectomy) but I "was lucky as the cancer had not become invasive." I would have to have a mastectomy, but did not require chemo or radiation......... just the tamoxifen BUT I had to come off my estrogen........ and my life has been in a turmoil ever since. I have terrible hot flashes  every 30-35 minutes and haven't slept anymore than 2 hours at a time in 18 months. In between that I freeze!!! I guess that is when I had to stop and say "if I don't have cancer, why am I going through all this?" Have gone thru the clonidine etc  and ended up taking the odd ativan at bedtime just to get 2 hours if I'm lucky. I was thinking this weekend that if this is not cancer then I may go back on a smaller dose of estrogen. Thank you all for your input. I guess I was kind of upset that sometimes you read where you only have DCIS (only in as much as it is not invasive, I can agree and I am really fortunate) but it sure isn't easy.

Don't you feel that this is very radical surgey for something that is not cancerous and will not become invasive? My doctor talked about my "cancer" and it could become invasive. Who is right? I would never have had such big surgery for this had I know it was not cancer and if it ever happens in the other breast I will not have the surgery.......... radiation therapy would do, I think! They treat DCIS too aggressively. Thanks for your comment.

Dear 123123:  Indeed, your DCIS was an aggressive form.  If it was multifocal or large, then mastectomy would be the treatment of choice.  Although DCIS is not technically cancer - due to no evidence of invasion.  Left alone, the condition exists that as cells multiply and divide, they are likely to continue the process of mutation and will, at some point, become invasive or frankly malignant.  At this point, it is capable of metastasizing.  Hope this helps to clear it up.

I too was diagnosed with extensive DCIS in my left breast in August....I had a mastectomy as well.  I have no regrets.  I am only thankful that it was DCIS and that it was treatable...I am told I require no further therapy aside from regular checkups at 6 month intervals.  

I think the key with DCIS is that it can become malignant if left untreated.  There is debate as to how often it does become malignant as there is evidence that a fair number of women have DCIS and it never becomes malignant (they have discovered this through autopsies of accident victims).  Many experts believe the grade of DCIS can be a factor (ie. the Comedo high-grade pattern).  Dr. Susan Love's book has a good chapter on DCIS.