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

Hi Mary,
Yes I’ve had my biopsies done. Started with screening mammogram, then they recommended diagnostic mammogram and ultrasound after that. They found 2 masses, about 2mm (one was on the lymph node) and micro calcifications. One of the 2 masses (which I’ve had since my first mammogram back in 2008) still turned out benign. But the 2 new ones - the microcalcifications and lymph node, were suspicious of malignancy so they recommended the biopsy.
I had stereotactic biopsy on the microcalcifications and ultrasound guided biopsy on the lymph node. That was last week Wednesday.
Got the call Friday that same week - the microcalcifications showed positive for breast cancer cells, but the lymph node was benign /normal which is good news and that is why so far they believe it is stage 0. I talked to my primary Dr yesterday and just learned that it is ER+. Will know more on Monday when I talk to the surgeon.

Hi, I was stage 0 DCIS but after surgery level 3. This meant radiation and AI.

Step by step you will get a plan in place. I had consultations with two different organizations/surgeons. It helped me to know they both had similar plans.

Good luck.

It’s scary, I know. But it’s important to remember that stage 0 is really considered to be pre-cancer. In 2007, I was diagnosed with DCIS / Stage 0 in two separate locations in my right breast. One cluster was very large I had a lumpectomy followed by radiation. Seventeen years have passed with no further recurrence.

If you are large-breasted and you have radiation directed to the underside of your breast, I would recommend wearing the ComfortSlings products as soon as you begin treatment. I wore a ComfortSlings sling nearly 24 hours a day from the beginning of my radiotherapy. By the treatment’s end, my skin had darkened slightly at the radiation site, but was otherwise unchanged. I had no pain, no broken skin.

ComfortSlings eliminate perspiration and prevent skin-to-skin abrasion beneath the breast. The relief is awesome. The company sells both slings, with cushions on adjustable straps that tuck beneath the breast, and cushions without the straps to tuck inside your bra cup. I continue to wear a double-sling at night to prevent rashes beneath my breasts during the hot summer months. http://www.ComfortSlings.com

Good luck! I wish you many years of good health!

Just an update - my appointment with the surgeon went well, he explained the pathology results and showed the mammo images where the calcifications were. I am scheduled for lumpectomy on July 11th, and the surgeon will be referring me to a radiation oncologist and medical oncologist. I learned that mine is Grade 2 and ER+, so meds are likely to be part of my treatment.
Been a roller coaster to say the least. But each day I find something good to be thankful for. The best thing about my appointment with the surgeon was he told me at the end of our talk - you’re going to be fine, I am a Christian and I believe God is in control and you will get through this.

Thank you for your advice!! I was going to start looking for bras with open closure!

Another boost for today knowing that people have gone through the same thing and are doing well. Thanks again for sharing!

You're very welcome!

Thank you for the update. My report shows Grade 3 DCIS ER+, similar report, so I assume we will have a similar treatment plan. I do not have an appointment until July 2. I thought that was a long wait. They did say that BC patients are on an escalation list and would move my appointment up if any cancellations.

I know it seems like an eternity for us. But when I had my biopsy, they asked when I had my mammogram and I said 2 weeks before the biopsy. The nurses told me that that’s already caught up, they used to have a 3 month wait mainly due to Covid at that time plus they were waiting on their new stereotactic machine. At that point, I told myself I’m lucky enough that I only waited 2 weeks.
My dr told me the same thing, it’s stressful to wait and we just want to get it out of our system but he said there is a progression and each treatment will be tailored based on your case.
I take deep breaths and tell myself, this is the earliest stage and be grateful that it is caught early. I’m trying to be more patient too and think of other things to keep me busy (work does for sure!) and before you know it your appointment date is near.
Keep us posted as well.

Hi! That’s great that it never returned:). Did you take tamoxifen too after radiation? Also, how old were you when you were first diagnosed? I have dcis stage 0 also.

I only had radiation - no taoxifen or other medication. I was 64 when I was diagnosed! Good luck to you. With stage 0, the odds are definitely in your favor.