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

I thought DCIS is ductal carcinoma insitu. It's caner but is still inside the ducts, as apposed to hyperplasia which is abnormal cell growth, precancerous. DCIS is treated with surgery, radiation, and depending on the oncotype chemotherapy as well.

My aunt had DCIS. She went through surgery, radiation, and took Tamoxifen for 7 years. No AI due to rheumatoid arthritis. She's now 9 yrs out. My understanding is DCIS doesn't recur. I found the best way to deal with anxiety is walking. I was dx with IDC 2 years ago. Walking helps me calm while going through treatments. Wish you all the best.

Thank you for your input! I agree that walking helps. I’ve been trying to take walks every night outside and just relax (weather is much more pleasant). Also adding some exercise to get my body ready for surgery and praying recovery will be fast.
Wish you all the best as well and hoping everybody will get through this journey!

Thank you for your well wishes! I've finished all treatment and currently on AI and cancer surveillance, MRI and mammo yearly. You'll do well. Hugs.

Laurie gave very good recommendations, especially the MRI. You want to make sure that all suspicious locations are identified since mammo can miss some. That way the treatment plan covers all issues. My cyst was palpable but the mammogram didn't see it. Because it was palpable, an ultrasound was ordered right after. After the surgery, I became worried that there might be other missed suspicious spot or the other breast might carry cancer cells. Fortunately, the later MRI was ok. Hugs.

You are absolutely right . It’s a precancer. As my surgeon advised we do not yet know what pushes it to be invasive cancer . They are currently holding clinical trials for DCIS stage 1 and 2 to see if any of those women do become invasive and why. With the new thinking that maybe they have been over aggressive in some of the treatments especially if DCIs stage 1. DCIS 3 does not qualify yet .It’s a definite conversation to have with a care team . Ask questions and never take the first consult .always speak to different breast surgeons if you can . It’s always good to hear different perspectives.

Thank you for this! Unlike most comments I’m reading on here, my reaction is very different. Treatment for DCIS is way too aggressive and ever doctor and surgeon sees dollar signs with any diagnosis. The pandemic has revealed the health profession what what it is, corrupt and profit driven. I will gather information, ask a lot of questions but I will not be a victim of scare tactics and pressure to have anything done! My DCIS is 5 mm. I have not had a biopsy yet because I’m just a few months away from being on Medicare. I’m in no rush.

How did they determine it was DCIS though without a biopsy . The biopsy is what gives you the staging and grade. You still need to know if it’s DCIS 1, 2 or high grade 3 .

True! My biopsy is being delayed a few months because I’m about to go on Medicare, but you are correct; they won’t know for sure until the biopsy. I should have been more clear. After my second mammogram I was told this is what THEY THINK I have, DCIS. I don’t know the level etc. I’ll find out in September and let you all know. In the meantime I am gathering information from you all.

Ah thank you for the clarification. Wish you the best for sure and hey it may turn out you don’t have anything since they haven’t done a biopsy. Please keep us posted