Just diagnosed with DCIS: How do I know what questions to ask?

If you can, I’d suggest rethinking not taking your sister-in-law with you to your appointment. Yes, she can explain the information that is recorded, but if she goes, she might know which questions to ask during your appointment. I wish you all the best 🙏

You might want to ask for an oncotype test, which will determine recurrence rate and help to determine best type of treatment.

Thanks for the advice, I’ll include that in my list of questions.

I was just dx 2 weeks ago. I have already learned to just breathe. Educating myself has been extremely helpful as I know what to expect. I have no risk factors for BC and I've had mammos every year (except last year) for the last 18 years. I was caught off guard by the suspicious mammos and then the biopsy report.
I have High Grade DCIS hormone receptive. I am supposed to be going to Mayo for treatment. I am just getting the ball rolling, so I have nothing set up at this time. It has bene an emotional roller coaster, but the last few days have actually been okay. I am in limbo waiting to get an appointment set up and I have researched about as much as I can at this point. Sending big hugs your way.

I was just diagnosed with DCIS as well. I hope you experience the same level of detail I did with my surgeon. She took me through the pathology report and explained what it all meant, talked thru lumpectomy vs. mastectomy. Take some time to jot down any and all questions with the expectation they'll get answered. I had a full hour consultation and I hope you'll get the same. I know how scary this is and it may be hard to focus so take someone with you who can take notes. Hang in there!

Thank you!!
It gives a little comfort knowing that there’s people that take the time to respond with kind words. In the midst of what we are / will go through.
I sure hope the surgeon will explain it in detail. I have started with my list of questions, plus the guide Laurie gave in a separate comment.
Good luck with everyone and hope you keep us posted as well.

I can relate all too well to this thread. I had a biopsy Thursday (long Memorial Day weekend) and received the call yesterday afternoon that I have DCIS Stage 0 in one cluster, and the other calcification cluster in the sane breast is benign. Good and bad news in 15 seconds feels like it has changed my life forever. I'm grateful for the early detection but cancer is cancer and is SUCKS in any form. I feel like this is an out of body experience -- my body has turned on me. Yet, I trust God and his plan for my life. Learning how to EXHALE.

We are actually on the same boat. I have another lump in the same breast and they said it was benign. It was the microcalcifications that I have DCIS.
Praying for you as well! Quite frankly it is harder for me to pray right now, but I come to my senses and remind myself this is the time that I just need to surrender everything to God.

I'm also newly diagnosed with DCIS and still have almost 2 weeks till I will have my first appointment with the surgeon. I don't know how I would handle this without the Lord in my life but with Him I am so amazed at the peace I am experiencing so far.

DCIS is stage 0 cancer. It is not cancer. It is the presence of abnormal cells in the milk duck (“in situ” means in place). IDC is invasive which means it has moved outside the duct and has spread or is spreading. Doctors seem to be quite aggressive recommending anything from lumpectomy to mastectomy. You have had your biopsy then? Ask what kind of cells are involved. Are the aggressive etc. How large was the area? 5 mm? 10 mm? Was it one small spot, or everywhere. These answers will tell you what - if anything - you should do. I am in the same position except that I have not had the biopsy because I am about to go on Medicare so I’m waiting. Mine is 4 mm. Quite frankly I’m inclined to do nothing and see what my mammogram shows next year.