DCIS. in SITU stage 0 Treatment

Thank you for your information. I appreciate all input.
You have survived a lot and your strength and courage have gotten you to the other side of this!

I switch from my private insurance to Medicare come this Sept as I am turning 65 in Sept.
I have my medicare in place and a medigap part G plan in place to cover the additional 80% that medicare does not cover. I have an open plan where I am able to see any doctor in the US who accepts medicare. Just have to ensure the doctors are extremely specific with diagnosis orders for approval from medicare every time I need a specific test or the like.
I have been going only to the Memorial Breast Cancer Center in Hollywood Fl for my Mammos/Ultrasounds and Biopsies. I felt it best to go to a hospital where breast cancer is their primary focus. I live in Vero Beach which 2 hours away from there.
We do not even have a Specialized Breast Oncologist in this town or a specialized Breast Surgeon. Only generalized oncologists, generalized surgeons and generalized radiologists.
My husband does the driving so that is big help!!
I will consult with my oncologist and breast surgeon regarding an MRI after my biopsy in August. Staying positive for a benign result. As you suggested, an MRI would be best to see what the biopsy and Mammo cannot.
Thank you so much for sharing your journey and knowledge with me.🙏

Hi Alice. Hugs to you and sending you encouragement. It is good to ask questions and seek knowledge. I was diagnosed with breast cancer April 2026. I am turning 63 in one week. I am a retired RN which has been helpful in navigating this but it's still hard and I have had a lot to learn... Unfortunately, I have (had!) DCIS bilateral breasts with invasive DCIS to left breast. Small tumor 1.2 cm with 8 mm invasion and ER/PR positive and HER2 negative. Due to lack of breast tissue it was recommended I have double mastectomy. I had above muscle NS implants as well that were removed with mastectomy. I had my surgery 6/26/26 - double mastectomy with direct to implant with ADM (a type of mesh that supports the implants). So mastectomy and reconstruction at once which is nice! I had excellent surgeons which is key - had to wait a little to get my surgery due to getting 2 busy surgeons scheduled for my operation.... After contrast MRI before surgery it was determined I could do nipple sparing BUT I chose to have them removed and also per the plastic surgeon better plan since I was going down in implant size considerably and tissue needed to be removed. I am about 1 1/2 weeks out and it has gone well overall. Surprisingly pain has been very well managed and the hardest part is the activity precautions and managing the drains. I had clear margins (PTL), clear lymph nodes (4 taken to L) and no blood loss during surgery. I have even located a very skilled medical tattoo artist (that is actually local!) to do my realistic 3D medical tattoos - it's VERY realistic btw- but this will not be done until I am about 6 months out from surgery. All this to say ---- I had to go down an aggressive surgery path and in a lot of cases this is NOT needed but it was the best option for me. It has been a lot to process but I have managed to stay very intent on getting well (it's hard and yes I have had some dark days along the way). I caution you to be careful what you search for and read you hear about the bad stories and maybe not as much about the good stories. I have a book I would recommend: Breast Cancer: From Diagnosis to Breakthrough Treatment: Everything You Need to Know - Sophie Domingues-Montanari PhD - get the new updated 2025 edition. I follow a healthy diet and have a healthy lifestyle and exercise not allowed now but once able I will slowly get back into that. I will not need chemotherapy as the Oncotype DX lab was done on my tumor and the score was only 13. (This genetic lab only covered if you have invasive DCIS but it basically gives you information about how your cancer "behaves"). Now the endocrine therapies not sure about those - I am now being referred to a medical oncologist who will follow me long term...but will wait to see the recommendations. I do want the highest quality of life possible. Wishing you peace as you navigate this journey. I am so thankful to be on the road to recovery!! Love and hugs to all, Janie

I’m going this month for my first 6-month mammo after initial DCIS stage 0 diagnosis. There has been no MRI exam ever on my breast, and none is scheduled. My initial (and only so-far) biopsy was done with ultrasound guidance. Any advice as to how to have a successful resolution in getting an MRI to gather more diagnostic information? Advocating for oneself is a stress on its own, and sometimes I feel as though those of us who are non-doctors are expected to be uninformed and non-participants in the treatment process.

@orienteer One approach to advocate for yourself is to be aware of the words used in this upcoming mammogram report. Sometimes they will wait until after the mammogram to decide if they need more scans (MRI or US).
Below are some things to look for on your report. If you find that there might be an indication that the DCIS has grown or changed shape in the report - then they should be able to tell you the plan to address the changes, and maybe ask for an explanation of why they would not do a MRI, and what is the criteria they use to decide for/against an MRI.

Ask what letter designation has been given for your breast density it may give you more info to use to request an MRI. A mammogram usually is used to determine density - but it doesn’t always show up in your report as A-B-C-D, they usually just say dense or not dense. The A level is almost entirely fat cell, D is highly dense. I was at C level at diagnosis and had a MRI. I’m now at B because tamoxifen has an effect on density at my age. But I’m still listed as have dense breasts, and have had yearly MRIs since surgery for DCIS 0, 1.6 cm, intermediate grade, one sister with DCIS.

A mammogram report will use specific terminology to describe the morphology (shape) and distribution of calcifications.
Suspicious words detailing changes, growth, or increasing calcifications include:
Morphology: Words like pleomorphic (varying in size, shape, and density), linear, or amorphous (small, hazy, and irregular).
Distribution: Terms indicating the spread, such as segmental (within a lobe/duct system) or linear (arrayed in a line suggesting a ductal deposit).
Progression/Changes: Look for phrases like new cluster, interval increase in extent, increased number of calcifications, or change in morphology.

Expected DCIS Growth
What is it? DCIS is stage 0. Growth generally happens linearly, constrained within the milk ducts, rather than forming traditional, round, expanding tumor masses.

Intermediate Grade: The cells look more abnormal and grow slightly faster than low-grade DCIS. Calcification studies show this grade extends along the ducts at an average axis of about 4.2 mm/year.

High Grade: These cells grow the fastest and look the most abnormal under a microscope. Calcifications for high-grade DCIS can spread along the ducts at a faster rate of roughly 7.1 mm/year.

With these numbers, a six month growth might be half as much, but I don’t have facts about that. If you were at Low Grade, and there is new growth you can look at the speed its grown in case it has changed to a higher grade.

A biopsy using ultrasound is very typical. I have found through reading or listening to the doctor, that a lesion 2 cm in size triggers a much more thorough exam. If its smaller, then there is usually other factors that push them to do more extensive scans. That might be, high grade or intermediate grade that has features they are concerned about, sometimes its the location in the breast or family history, etc.

What I’d do is: when you get the latest mammogram report check for changes in the dcis. If you have a way to message the doctor in your health portal, I feel that if I put my concerns in writing they pay more attention as it becomes part of my medical record.
Besides the growth, I would ask about if it says amorphous, or segmental. A change to amorphous is probably a morphology change and more scanning might be needed. Segmental might mean its grown toward a lobe, and more scanning might be needed, although I think a mammogram is supposed to do a better job of identifying LCIS.

Please listen to Keeping abreast with Dr. Jenn Simmons before you start any treatment.

https://podcasts.apple.com/us/podcast/keeping-abreast-with-dr-jenn/id1697193398 This is Dr. Jenn Simmons Keeping Abreast is her podcast. Please listen first.

@orienteer https://podcasts.apple.com/us/podcast/keeping-abreast-with-dr-jenn/id1697193398

Thank you for sharing your diagnosis. I truly empathize with your diagnosis and their suggested plan for treatment. Happy you are choosing your own treatment path!
And I have never heard anyone suggest AI’s before. This is interesting.
Yes, the COMET trial was only a two yr study so there are not many research statistics to go on when choosing active surveillance.
That is what makes the DCIS treatment decisions for us so challenging.

And I thank you so much for sharing the podcast!
I just listened to it and I have also ordered her book. It will be here Friday. 😉👍
I am also following her podcast.

My DCIS in SITU was diagnosed in Oct 2024 is in my Right breast, outer lower quadrant, Grade 1 (Low Grade) H&P positive.
I am monitored every 6 months with a Tomo Mammo.
They found suspicious calcifications again in a different area of my breast in July 2025 at the 12 oclock location in the upper center region of my R breast which was followed with another biopsy a in July 2025, which was benign.

My next 6 mo tomo was in Dec 2025 and no new findings.

The next 6 month was just this June 2026, and was also my annual where I get an ultrasound for each breast and Tomo mammo for each breast every 12 months. ( I have about 4 benign cysts in my left breast that have been there for years)

When I went in June 2026, I was brought back to the screening room twice as an additional “more compressed” screening was requested in a particular area where my original DCIS was diagnosed. The results stated:
“questionable subtle increase in adjacent calcifications possible representing progression”

I wanted more info so messaged my Surgeon thru the portal.
They have a board that reviews results , which consists of radiologists, surgeons and oncologists. My surgeon was on the board in this particular review. She said that the consensus was for me to have another biopsy, which I am having on Aug 4 2026.

Prior to the surgeon, I had a conversation with my oncologist who was pressing surgery. I expressed that I am not doing any surgery without another biopsy to see if anything had actually developed. And that I could not do the biopsy until August. She acted as if August was a lifetime away; as if I should get it done immediately.
I told her that it’s not like I am in stage 4 and am going to die tomorrow and that. it can wait. ( yes, I am quite frank with her. I told her I resoect and appreciate all her expertise and her care for me, yet she has to respect my decisions and as well. Thats when I said that I will discuss this further with my surgeon. My surgeon is the one who agreed with the “over treatment” and agreed with my decision for observational surveillance.

But, after listening to the podcast, it gives me great pause for all these mammos and biopsies I am getting while being monitored.

My oncologist puts such fear in me which results in anxiety beyond belief.
I do not want a lumpectomy as research shows that there is no guarantee it will not show up somewhere else. Thats the same risk as not having the lumpectomy for Low risk slow growing.
Do I want the risk of many other side effects from targeted radiation and hormone therapy?
Oncologist worried now that since I am HP + that it going to advance if I do not have hormone suppressant therapy while being monitored.
(I chose not to take the medication while being monitored)

I am just staying positive that I will remain well and not worry as it does not help my body or mind.

The best thing I can do is to gather as much information as possible on this subject in order to make the best informed decision for myself.

This blog has been a blessing and all of the BREAST-IES on this blog are my wonderful first hand support and informational system!

Ultimately, every diagnosed person’s decisions and treatment choices are personal for their mind and body. I deeply respect everyone’s personal choices. None of this is easy.

Glad we are able to support one another. And I will continue to remain on the blog!
I will post my Aug 4 results. Much love and courage to you!!

@triciaot
Thank you for this wealth of information.
I printed out your information and highlighted areas that apply to my previous pathology reports to use a my guide when speaking with my doctors.
Any wording which I was unfamiliar with, I Googled and printed to attach to my paperwork.
This helped me greatly in understanding the pathology reports and understand more about my diagnosis, which in turn, will aide in my future decision making process.
My October 2024 diagnosed DCIS In SITU in my R breast lower right quadrant, 5 mm Grade 1, ( low grade) HP+ .

My recent 6/26 Mammo showed
“Questionable subtle increase in adjacent calcifications, possible representing progression”
Therefore, I have another biopsy scheduled on Aug 4, 2026
And you were spot on: radiology only checked the box stating that my breasts are Not Dense. ( no level of A, B, C, D)

Your post was so helpful and I am grateful!
I love this blog! ❤️