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Understanding DCIS
- Causes of DCIS
- Genetic Testing
- Self Advocacy
- Decisions
- Screening
- Getting a Biopsy
- When DCIS is Diagnosed
- Getting a Second Opinion
- Psychological Impact
- Understanding Risk
- Treatment








Decisions are easier when you have credible information to work with. We have included here some basic questions and answers about DCIS to help you make informed decisions, as well as questions for you to ask your doctor as you move through the steps of screening, biopsy, diagnosis and treatment.


Understanding the following basic information will help you to ask questions of your doctor and make decisions that are right for you:

How does DCIS differ from invasive breast cancer?
One difference is that a DCIS cell lacks the biological ability to metastasize (spread to other parts of the body). The abnormal cells are confined inside of the duct.

What is the size of the DCIS?
Hidden areas of DCIS and invasion are rarely present in the same breast when DCIS is less than 5 millimeters or 1/5 of an inch in size (the smaller, the better).

What is the type of DCIS that was found?
The type of DCIS identifies risks for the development of invasive cancer. DCIS is classified according to its appearance and grade: low, intermediate and high. High-grade is likely to be more aggressive than low-grade.

What is the size of the margin (clear tissue containing no DCIS) around the DCIS that was removed?
This is a major element in determining the likelihood that invasive cancer or more DCIS will occur in that breast in the future. Your doctor will want to be sure there is a clear margin or adequate tissue removed around the DCIS. Ideally, the margins should be between 1 millimeter (4/100 of an inch), and 10 millimeters (1 centimeter, or 2/5 of an inch). At a minimum, there should be no tumor at the margin. Margins with a width of 3 millimeters or greater are associated with a reduced risk of recurrence. This is a reasonable treatment goal.

What is the chance that invasive cancer or more DCIS will occur in the breast in the future (recurrence) with the following treatments:

More surgery on that breast or a mastectomy? The likelihood of invasive cancer or more DCIS depends on: 1) how aggressive the DCIS is according to the pathologist; 2) how close to the edge of the tissue specimen the DCIS is found; and 3) how large is the area of DCIS. Some women have a large area of DCIS or DCIS in two or more areas of the breast, and the only option for removing it all is to remove the entire breast (mastectomy). For those with one small area of DCIS, mastectomy is not necessary to have a good outcome. The majority of surgeons recommend removing all of the DCIS, which means that women who have positive margins after biopsy will need more surgery to completely remove the DCIS.

Radiation therapy to that breast? Radiation therapy reduces the risk of DCIS recurring, even when it has been completely removed. Whether to have radiation therapy is a very individual question, and should be discussed with a radiation oncologist and a surgeon, with perhaps a second opinion in both of these fields.

Tamoxifen treatments? Tamoxifen has been shown to reduce the risk of DCIS recurrence by about half in women who have estrogen positive (ER+) DCIS and have been treated with surgery and radiation therapy. The risks and benefits of tamoxifen should be discussed with an oncologist or the surgeon. There is no proven benefit of Tamoxifen to women who have ER negative (ER-) DCIS.

Aromatase Inhibitor treatments? Studies are underway, comparing Tamoxifen to Aromatase inhibitors in estrogen positive (ER+) DCIS patients who are post-menopausal.

What is the chance that I will develop DCIS or an invasive cancer in the other breast?
Understanding Risk

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Some individuals are very comfortable with making medical decisions with the help of medical personnel. Others prefer to personally master all available information, breaking the process into various steps and related questions. If you like to have these questions and issues detailed, the following suggested questions may be useful to you.

Before your biopsy: Questions to ask your surgeon or radiologist

Answers to these questions will help you understand what to expect during the biopsy procedure and what information the procedure will provide. Be prepared to discuss your other medical conditions and history with your surgeon, and always bring a current list of all your medications.

  • What type of biopsy will be performed and how is it done?
  • Is the surgeon skilled in performing breast biopsies? (It is best if the individual surgeon and/or radiologist performs at least five or six such procedures every week.)
  • How long does the procedure take? Will it hurt? Will I have some kind of anesthetic? How long will the anesthetic last?
  • Where is the biopsy done? At a hospital? Surgical center? Radiology Department? Outpatient department?
  • Do I need someone with me to drive me there? Take me home?
  • How much tissue will be removed? Will there be a scar? Will the shape of my breast change?
  • When will I get the results of the biopsy? How will I get the results — will you call me? Do I go to your office? (Ask yourself how you prefer to get the results.)
  • Are there other tests that are needed at this time?
  • Are there side effects from the biopsy that I need to be aware of?
  • If I do have DCIS, who will talk with me about treatment? When?

Before treatment begins: Questions to ask your surgeon or oncologist

  • What did the biopsy show?
  • What are my treatment choices?
  • What are the expected benefits of each kind of treatment?
  • What are the risks and possible side effects of each treatment?
  • Are new treatments under study? Would a clinical trial be appropriate for me?
  • How will I feel during treatment?
  • What can I do to take care of myself during treatment?
  • Can I continue my normal activities?
  • How will my breast look afterward?
  • What are the chances of the DCIS coming back?
  • How much time do I have to get a second opinion?

If you are going to have surgery: Questions to ask your surgeon

  • What kind of surgery will be done?
  • Where will the surgery be done?
  • What type of anesthesia - general or local?
  • How long will I be there? Overnight?
  • How long will the operation take?
  • Will I need blood transfusions? If so, how do I bank my own blood?
  • Will there be a scar?
  • What will it look like and where will it be?
  • What do I have to do to take care of the incision?
  • Will my recovery be painful? Will I need pain medication?
  • Will I be able to do my normal activities after the surgery?
  • Are there special exercises I need to do?
  • Are there physical activities I should not do? For how long?
  • Will I need to have breast reconstruction?
  • If I decide to have reconstruction, when is that done? What are my options?
  • If I don't have reconstruction, are there other options?
  • Can I take a bath or shower?
  • Are there problems or symptoms that are common? How do I deal with them?
  • What problems or concerns do I need to watch out for?
  • Who do I call if I have questions? What phone number(s) do I use?
  • Who do I call during non-work hours, such as weekends, holidays, the middle of the night? What phone number(s) do I use?

About radiation treatment: Questions to ask your radiation oncologist

  • Why do I need this treatment?
  • What are the risks and side effects of this treatment?
  • When will the treatments begin? When will they end?
  • How will I feel during treatment?
  • What can I do to take care of myself during treatment?
  • Can I continue my normal activities?
  • How will my breast look afterward?

After treatment: Questions to ask your oncologist

  • What kind of follow up care do I need?
  • How often do I need a mammogram? (If you have a breast implant, it is very important to see a mammographer trained in reading the mammograms of women who have implants.)
  • Who do I call if I have questions about a problem? A symptom?
  • What kind of problems or symptoms should I be concerned about?
  • What are the chances of the DCIS coming back?

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