DCIS Questions to Ask Your Doctor

Bring this list to your appointment. Print it, save it to your phone, or share it with someone you trust.

You are allowed to ask questions. You are allowed to take your time. And you are allowed to seek a second opinion. Ask your doctor if you can audio record your appointment. 

12 Questions to Ask Your Doctor

1. Do you believe DCIS is “cancer,” “pre-cancer,” or a risk for future invasive cancer?

This is an important conversation to have. Ask your doctor what DCIS means in your particular case and what they believe your diagnosis means for your future risk.

DCIS is classified as Stage 0 and noninvasive because the abnormal cells are confined to the milk ducts and have not invaded surrounding breast tissue.

Understanding exactly what you have and what you don’t have is an important first step.

If a Biopsy Is Recommended: Ask About the Clip/Marker

A clip or marker is sometimes placed at the biopsy site so the area can be identified on future imaging. If you are considering long-term monitoring, it is reasonable to ask about the marker itself.

• Is a clip/marker necessary?
• Can I avoid having a clip/marker placed if I plan not to pursue immediate surgery?
• What is the purpose of the clip/marker in my particular situation?
• Are there potential complications or allergic reactions associated with the clip/marker?
• Are there studies on the long-term effects or safety of leaving a clip/marker in the body?
• Are clips/markers the same at all imaging centers, or are there different types and materials?
• What type and material of clip/marker would you use?
• Could the clip/marker affect future imaging, biopsies, MRI, or other procedures?

2. Can you please explain my pathology report, including my grade of DCIS, ER/PR status, and any other points of concern?

Ask:

• What grade is my DCIS: low, intermediate, or high?
• What is my ER/PR status? What percentage is ER-positive, and what percentage is PR-positive?
• Is there necrosis? If so, how much?
• How extensive is the DCIS? Can you show me where on my breast?
• How was the size or extent determined? How much was biopsied and where? 
• How confident are you that the biopsy represents the entire area?
• Are there any signs of microinvasion or invasive cancer?
• Where can my pathology be reviewed by a breast pathologist for a second opinion?
• Can I have a copy of my complete pathology report?

3. Are there ways to determine my individual risk for future invasive cancer?

DCIS is not one-size-fits-all.

Ask:

• What factors make my DCIS higher or lower risk?
• What is my estimated risk of developing invasive breast cancer?
• How does my age affect my risk?
• Does the size of my DCIS affect my risk?
• Does the grade affect my risk?
• Does necrosis affect my risk?
• Does my hormone receptor status affect my risk?
• Does my family history affect my risk?
• Does my genetic profile affect my risk?
• Can a genomic or biomarker test provide additional information about my individual risk?
• What does that test tell me, and what can’t it tell me?

Ask for absolute numbers.

Instead of:

“This doubles your risk.”

Ask:

“What is my actual risk in numbers?”

And:

“What is my risk if I choose monitoring compared with treatment?”

Understanding absolute risk can make it much easier to evaluate your options.

4. What is your opinion on the DCISionRT biomarker test? Can you order this test for me?

Ask:

• Is DCISionRT appropriate for my situation?
• What information could it provide about my individual risk?
• How might the results affect my decisions?
• What are the limitations of the test?
• Are there other biomarker or genomic tests I should consider?

5. What is your opinion of the COMET study and active monitoring trials for low-risk DCIS?

Ask:

• What do you think the COMET study tells us?
• Am I similar to the women included in the study?
• Are there other active monitoring studies I should know about?
• Are there clinical trials I may qualify for?
• What are researchers learning about which DCIS is more or less likely to progress?
• Are there studies evaluating new approaches to monitoring DCIS?

Research into active monitoring is ongoing, and staying current matters.

6. Are there any resources you recommend for learning more about DCIS and/or offering peer support?

Ask for:

• Evidence-based educational resources
• DCIS-specific organizations
• Peer support groups
• Patient advocates
• Clinical trial resources
• Research studies you can read yourself

You don’t have to rely on one appointment or one source of information.

7. Are there any diet and lifestyle recommendations for women diagnosed with DCIS to reduce risk of future invasive cancer?

Ask:

• Is there evidence that diet can affect future breast cancer risk?
• What physical activity do you recommend?
• Does maintaining a healthy weight matter?
• Are there specific dietary patterns you recommend?
• What role does alcohol play?
• Are there environmental or lifestyle factors worth considering?
• Are there evidence-based integrative or wellness resources you recommend?

Be clear about what is supported by evidence versus what is speculation.

8. If I was interested in monitoring my DCIS, would you be willing to oversee my care?

If you are considering monitoring rather than immediate treatment, ask:

“Would you be open to supporting me with a safe evidence based long-term monitoring plan?”

Then ask:

• What imaging would we use?
• How frequently would I be monitored?
• What would we establish as my baseline?
• What changes would trigger additional imaging?
• What changes would trigger a biopsy?
• What findings would cause us to reconsider monitoring?
• Can we agree on those criteria before beginning surveillance?
• Who will oversee my monitoring over the long term?
• What happens if my imaging changes?
• Would I have time to make a decision if something changes?
• Are there clinical trials studying active monitoring that I may qualify for?

Ask an important question:

“If I choose active monitoring, will you support me and work with me to create a monitoring plan?”

Your healthcare team should be willing to have an honest conversation about your priorities and preferences.

9. I have concerns about too many mammograms and MRIs. What are my options for monitoring DCIS long-term?

This deserves a detailed conversation.

Ask:

• What are my options for long-term monitoring?
• How often do I actually need imaging?
• What are the advantages and limitations of mammography?
• What are the advantages and limitations of ultrasound?
• What are the advantages and limitations of MRI?
• What are the potential downsides of repeated conventional imaging over many years?
• Do I have dense breasts?
• How does my breast density affect my imaging?
• Could another imaging technology provide useful information for long-term monitoring?

Ask about your imaging records and second opinions.

• Can I obtain copies of my actual images, not just the radiology reports?
• Where can my images be reviewed by a breast-imaging specialist for a second opinion?
• Should I establish a baseline scan now for future comparison?

Ask about emerging breast imaging technologies.

Breast imaging continues to evolve.

Ask your doctor:

“What are your recommendations on emerging breast imaging technologies that may be safer for long-term monitoring?”

Technologies you may want to ask about include:

• ABUS — Automated Breast Ultrasound
• AWBUS — Automated Whole Breast Ultrasound, which can also evaluate the armpit/axillary region
• QT Imaging – provides a 360° view of the breast. 

Ask about the advantages, limitations, evidence, and availability of each technology and whether any may be appropriate for you.

Technology may change over time, so staying informed matters.

10. Do you have any patients who have been monitoring DCIS and incorporating healthy diet and lifestyle changes?

This can help you understand your doctor’s experience with patients who have chosen a monitoring approach.

Ask:

• Have you overseen patients who chose active monitoring?
• What monitoring protocols have you used?
• What have you learned from those patients?
• How do you evaluate changes over time?
• Are there lifestyle or wellness resources you recommend?

Your doctor’s experience may also help you determine whether they are comfortable supporting a personalized monitoring plan.

11. Do you have knowledge of alternatives to hormone-blocking medication?

If your DCIS is hormone-receptor positive, ask:

• What benefit would hormone-blocking medication provide for someone with my individual risk profile?
• What are the potential side effects?
• What are the potential long-term risks?
• What happens if I choose not to take it?
• Are there alternatives?
• What evidence exists for lifestyle approaches?
• How would we monitor me if I decide against hormone-blocking medication?

Ask your doctor to explain the absolute benefit, not just the relative risk reduction.

12. What studies do you recommend I review?

Ask your doctor:

• Which studies should I read?
• What research do you consider most important?
• Are there studies about active monitoring?
• Are there studies about DCIS progression?
• Are there studies about emerging imaging technologies?
• Are there studies about lifestyle and breast cancer risk?
• Are there new clinical trials I should know about?
• How can I stay informed about new research?

You deserve to understand the evidence behind the recommendations being made about your health.

Understanding What “Change” Means During Monitoring

Changes on imaging don’t automatically mean that invasive cancer has developed.

Ask:

• What changes are you looking for?
• What constitutes meaningful progression?
• How do you distinguish a significant change from normal variation?
• How can inflammation, hormonal changes, or other factors affect imaging?
• If something changes, will another imaging modality be used before a biopsy?
• What would make you recommend a biopsy?
• If a biopsy is recommended, can we discuss why it is necessary and what information it is expected to provide?

Understanding the decision points ahead of time can make long-term monitoring less stressful and more predictable.

If a Biopsy Is Recommended

A biopsy is a medical procedure, and it is reasonable to understand why it is being recommended.

Ask:

• Why do I need this biopsy?
• What specifically changed? How can we monitor that change before a biopsy?
• What information will the biopsy give us?
• Are there alternatives to biopsy that could provide useful information first?
• What type of biopsy are you recommending?
• Why this type?
• What are the potential risks and complications?
• Could the biopsy affect future imaging or breast tissue?
• What happens if I decide to wait?

You can ask questions before consenting to a procedure.

Ask About Second Opinions

You don’t have to rely on one opinion when making an important healthcare decision.

Consider asking:

• Would you recommend a second pathology opinion?
• Can I have my imaging reviewed somewhere else?
• Can I obtain copies of my pathology slides, reports, and imaging for another opinion?

A second opinion doesn’t mean you don’t trust your doctor.

It means you are gathering information. DCIS pathology results can vary from doctor to doctor.

Before You Leave Your Appointment

Make sure you know:

☐ Exactly what your pathology says
☐ Your DCIS grade and extent
☐ Your ER/PR status and percentages
☐ Whether necrosis is present
☐ Your breast density
☐ Your individual risk factors
☐ Whether a biomarker test may be appropriate
☐ Your imaging options
☐ Your long-term monitoring options
☐ What would trigger additional testing or biopsy
☐ Whether a second opinion would be helpful
☐ Whether you qualify for a clinical trial
☐ When your next appointment or scan should be
☐ Who will manage your long-term monitoring

And get copies of your:

Pathology report • Imaging reports • Actual imaging • Other relevant medical records

Remember: You Are Part of the Decision

A diagnosis does not mean you have to stop asking questions. Click to download a pdf of the questions HERE. 

Your healthcare decisions should be based on your individual situation, the best available evidence, and your own values and priorities.

Research is changing. DCIS research is changing. Imaging technology is changing.

Stay informed. Ask questions. Seek second opinions. Know your numbers.

And if you are considering active monitoring, ask:

“What would a safe, evidence-based monitoring plan look like for me?”

Information is power. Informed consent is nonnegotiable. 🧡