The Confusion Over DCIS: What to Do About 'Stage Zero' Breast Cancer?

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I've just been diagnosed with DCIS in multiple areas of my right breat stage 0. Breast center was all happy telling me that if I had to get breast cancer this was the one to get. (yay me) Path report says I am grade 3. Surgeon says because I have implants already that radiation will be really difficult. All of her patients with implants have severe problems with radiation treatments. They get hard and unbearably painful. She is very concerned about my history with blood clots and the tamoxifan with the radiation. She feels that I am a strong candidate for a double mastectomy due to my age and the fact that this could recur. I am scheduled for a MRI this week to see if there is any unusual activity in the blood vessels. I am scared, pissed and not sure what else. I have already had a soft tissue cancer in my back right behind my right breast. I also had a radical hysterectomy 2 years ago because they thought I had ovarian cancer. I have just had enough! K

K of VA 7:38PM December 03, 2011

I'm currently grappling with precisely with this situation - being recommended to get a stereotactic biopsy for a very small group of microcalcs. 55 yrs old, no history of bc in family, other health problems that make me wary of jumping into biopsy (which is NOT an innocuous procedure without risks). Even if it were to turn out to be DCIS, i wouldn't be able to do radiation, drugs, etc, due to my existing health issues. Doc and general surgeon have both pressured and used exaggerated terror tactics to force me to do the biopsy. I want to re-test in 6 months and watch the calcs. This is not going to be acceptable to these people. But I am going to stand my ground. Also, I wish women here who have opted for highly aggressive therapies based on THEIR findings or their family history would stop recommending to other women that they should do that. If you want a double mastectomy for DCIS, then so be it. But until we honor everyone's right to choose and make individual decisions based on their unique situation, we won't ever get past the name calling and finger pointing, some of which is truly out of control on some of the breast cancer forums if any woman with a different approach tries to get her own story out there. thank you.

We Need Choice of CA 2:24PM November 18, 2011

My mother was diagonosed with the DCIS from what I am reading does this mean that this is pre-cancerous cells? So does this mean that it could turn into invasive breast cancer? What are the stages of DCIS? What is considered high risk of DCIS?

Bonnie of NC 11:10AM November 13, 2011

Thats some educative piece.

healthiest foods of AL 4:17AM October 30, 2011

Hi Everryone,
I have DCIS low grade from the pathology report.
How many weeks that I can wait to get the surgery?
Do I need to schedule Bone Scan, MRI, Chest Xray and Blood work? (saw one post mentioned)
Thank you.

april of NY 11:10AM June 18, 2011

I would like to share my very recent (May, 2011) experience with DCIS. I had NO symptoms! Thank goodness I paid attention to my body, however. I'm 65, in pretty good shape, eat well, exercise and have gotten regular mammograms. I had some tenderness in left breast and so when to the doctor. It seemed so minor but something told me to check on it. I've been around some loved ones with cancer so I guess I am uber-sensitive. I need you to be the same because...well, read on. My GYN ordered mammogram for left breast only. I have a cyst in right breast so asked if she would get that checked at the same time. She ordered a sonogram. That's when they found "calcification." This required a needle biospy. However, they were unable to perform it since I have implants and they couldn't get enough breast tissue for the needle to go in and get a sampe of the calcification to biopsy. So I had to have a surgical biopsy. After waiting almost 3 days for results, I was told it was the DCIS cancer but that he had gotten all of it. How does he know this? Because the edges of it were "clear" indicating no spreading of cancer cells. Who knows if one "escaped," however. So now I have to get either radiation treatment or take Tamoxifin. I read of potential side-effects of that and now hope for radiation, not that. I had to stop my "natural" HRT, estrogen! I took hormones for years b/c I had to have a total hysterectomy long ago. If you ever have to that, beg the doctor to leave your ovaries, or one, in place. This way, you can still produce estrogens naturally.
Please don't put off your annual mammogram for anything! If you can get the newest technology, other than a mammogram (x-ray), I would go for that. I say this due to the above article. And please, do me a favor and start spreading the word that MEN CAN GET BREAST CANCER, TOO! They need to do a baseline self-exam and keep doing it, just like we do. When I was at the mammography center, a man was there for a mammo. I feel fortunate the cancer was found early. Had I not paid attention to my left breast soreness, that DCIS would be still growing. I guess my body was "talking" to me since no symptoms in right breast where DCIS was lurking.

Carol of FL 11:34AM May 21, 2011

i was diagnosed with stage 1 dcis in september 2010. i to had 0 risk. i did all the right things, no bc in my family.
mine was found with mammogram.
my anger grows by the day at times over some of the things i read and are implied about dcis. gaining weight during menopause, eating meat, not exercising, etc. not all heavy women get bc, people who eat meat do not always get bc, not every couch potato gets bc.
my dr insists i have cancer. i do not. i have pre-cancer, a warning if you will.
many of the options such as radiation and tamoxifen are not options for me. i already have breast implants(14 yrs now) and i have a connective disorder. as well as all my female organs.
i will not be bullied, badgered, brow beaten nor scared into the status quo. i can read and we are on the internet. there are huge amounts of information and options.
i am 50 years old and a little over weight. i am opting for diet, exercise, and supplements for my treatment after lumpectomy.
i refuse to let my fear and panic rob me of the ability to make sound, rational decisions for myself. i want to see my children grow into adults to, i want to be a grand ma and live lots of years with my husband as well.
there are to many women who do not understand their diagnosis, or what it means. statistic can be and are confusing and way to misleading. dr's rush into things and only want to discuss STANDARD and ACCEPTED treatment options when so much is unknown and many are not willing to discuss options.
this is a frightening and stressful time. allow yourselves to be upset, rant, rave, cry, then start reading and ask questions and if your dr will not listen, does not answer your questions to your satisfaction, then go to a different one. find someone you trust and who will take the time and listen and answer and make you feel confident and able to help your self. this is your body and only you can decide what is right for you.
if i have made the wrong decision, then i will make a new one when the time comes. statistically i am on the lower end and i will try my best thru life style changes to keep it there. no one can promise that it won't or can't come back no matter what i do. even with a mastectomy, radiation, tamoxifen all of that, there are no guarantees.
i am moving forward as best i can. i will continue to read and follow studies and keep up on current treatment options because knowledge is power.
i encourage all of you to educate yourselves. don't be rushed or pushed into things you are not sure of or don't understand.
i wish all of you healthy and well.

lucy of NE 7:19PM November 29, 2010

I was diagnosed with DCIS stage 0. I'm scheduled for Bone Scan, MRI, Chest Xray and Blood work. I am interested in detoxification and the nutrition program.
Can someone help me find that information?
Thank-you!
Cindy of Pa.

Cindy Catania of PA 11:01AM November 28, 2010

Now all of sudden there is information galore about this. Where was this 17 years ago? I was diagnosed with DCIS and LCIS in December 1994. I had an annoying lump, did not consider breast cancer, and asked the surgeon to remove it. He did as I asked but found DCIS and LCIS in the margins of the lump. Of course, wanted to perform a double mastectomy. I opted out and saw another surgeon in Chicago. His opinion was to watch it. 17 years later, a radiologist wants to do a needle biopsy in an area no where near my original incision. They found non invasive DCIS. I knew it was there all the time. Where are the statistics of when it turns into invasive, what are the chances it will turn into invasive?

mar of MI 8:01AM November 19, 2010

Okay, but how many lives are lost due to surgery or radiation for DCIS? Radiation causes future cancers and damages the heart. Surgery is not risk free. What if the woman had one of those cancers -- or non-cancers -- that WOULDN'T kill her and she dies from the treatment? Don't tell me this doesn't happen -- I know a breast cancer "surviver" who subsequently died of heart disease due to radiation treatment.
But she was cancer free!
Aggressive treatment is not always best treatment. Overdiagnosis is not always the best diagnosis.

Mary Turzillo of OH 2:19PM September 23, 2010