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Atypical Ductal Hyperplasia or DCIS....am really frightened

Posts: 1
Joined: Sep 2013

I just received my CNB results that states I have ADH.    The core biopsy showed 2 areas that look suspicious.  They took 6 samples from each area for a total of 12 biopsies.  Now the surgeon wants to do 2 lumpectomies & hopes there's will be no DCIS or worse.  There is mention of columnar cell atypia & flat epithelial atypia as well.  No mention of necrosis or multi focal but there is mention of focal in areas.  I don't know  the size of area of ADH but the samples of biopsy said 0.3-0.4 cm in one area & 0.2-0.5cm in the other area.   Both affected areas are in the upper quadrant of the right breast.

Can anyone give  me any idewharf they think this is DCIS?   My family dr thinks it is.    I have 2 sisters who've had it also.

Thank you & bless you all.





Posts: 1191
Joined: Dec 2010

First of all, ADH is atypical ductal hyperplasia. As cells mutate, ADH is the last precancerous condition prior to them mutating to DCIS (Ductal Carcinoma In Situ, which ONLY occurs within the milk ducts and is Stage 0).

The fact that you have two sisters that have had DCIS already, makes you higher risk for bc, but you may have caught it early enough.


Breast Cancer

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Ductal carcinoma in situ

Ductal carcinoma in situ (DCIS; also known as intraductal carcinoma) is considered non-invasive or pre-invasive breast cancer. DCIS means that cells that lined the ducts have changed to look like cancer cells. The difference between DCIS and invasive cancer is that the cells have not spread (invaded) through the walls of the ducts into the surrounding breast tissue. DCIS is considered a pre-cancer because some cases can go on to become invasive cancers. Right now, though, there is no good way to know for certain which cases will go on to become invasive cancers and which ones won’t.

About 1 in 5 new breast cancer cases will be DCIS. Nearly all women diagnosed at this early stage of breast cancer can be cured. (http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-breast-cancer-types)

Your doctor can not "think" it is a cancer without a biopsy of all the mass(es)/lump(s). You can guess til the cows come home, only a biopsy can know for sure.

I had lots of ADH when I was diagnosed, but my lump was so large (the size of a breakfast sausage) that I had a biopsy, then lumpectomy which found DCIS. 

I think calling the American Cancer Society for newly diagnosed is an excellent idea. 1-800-227-2345. They can answer your questions, help you, guide you to information, find questions that you never knew you had. 

They also have excellent easy to read information on the basics of cancer, breast cancer info at: http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-breast-cancer-types

I would suggest to be careful you when you look on line and not google every place. Make sure you are going to a credible site. AND IF YOU CAN'T READ INFORMATION ONLINE FOR INFORMATIONAL PURPOSES ONLY, AND ARE GETTING ALL WORKED UP AND FRETTING, THEN PERHAPS IT IS BEST TO WAIT AND ASK YOUR DR. QUESTIONS.

Write all your questions down for  you doctor. He/She should be explaining all these things to you. Try to bring someone else along to  your appt. because for many of us, our head swims at the doctor's appt. and it is good to have another pair of ears.

DCIS is the best breast cancer to have. It is the lowest stage. I am  hoping that they don't find anything invasive.

Make sure you get copies of ALL your PATHOLOGY REPORTS for your records! And have your doctor go over it line by line with you!

Ask if  your clinic has a Breast Cancer Nurse Navigator. Good ones can help you through this, attend appts with you, be there for support, questions, give you tips/hints along the way.

There is another website I use besides this one called breastcancer.org. Unlike this site, it is only devoted to breast cancer and has forums of different specific topics. One nice thing about that site is that the different Stages Of Breast Cancer are divided up into sections. There is a forum totally devoted to DCIS that you might find helpful. There is a lady there named, Beesie, who has excellent information about DCIS.

There is also a section called High Risk for Breast Cancer that you should take a look at it. You will find many men and women there to relate to.

I like to use this site and bc.org.

Breastcancer.org also has informational pages about bc. at : http://www.breastcancer.org/symptoms/diagnosis. If you can look there without getting all worked up and emotional, take a look there,too.

I find, although it was difficult, to not try to catastrophize to the worst case scenario. I don't know why it came easy for me.

Remember....you can use us for information, BUT ALWAYS ASK AND CLARIFY THINGS WITH YOUR DOCTORS!!!!

Let us know how you are doing. We love to help.


Posts: 1
Joined: Sep 2016

After a horrible biopsy (black huge area) I was diagnosed with Atypical Lobular. Then they want me to rush off to a surgeon...done a lot of reading this is a huge grey area in meds apparently. After 3 mammeos (including the new ones with LOTS of radiation, a TON of x-rays, I am not happy with the surgery idea or the drugs, which cause more cancer elsewhere. Getting a second opinion but think I will adopt a "wait and see" attitude. They didnt care too much about the huge bruise left...What is WRONG with our system! Anyone have this? Would love feedback

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