DCIS. in SITU stage 0 Treatment

Hi Alice! Way to go in advocating for treatment that works for you!! I am in almost your exact same situation with DCIS, and making similar choices. I was diagnosed in January this year, and am having my first active surveillance recall this month. I choose the no surgery path because, although it is quite small, stage 0, 1 cm, the calcification area would involve complete removal of my nipple and areola to get the margins. This would be a partial mastectomy, to remove something that may not need treatment. My PCP is very supportive; the surgeon wants to take it out; the oncologist wants me on AIs. I am also familiar with the Comet trial, and feel it is very significant. The surgeon—who I deeply respect— cites the lack of long -term data as reason to proceed with mastectomy. Can you tell me what monitoring methods were used during your rechecks? Why did they do additional biopsies—is that to be expected ? Thanks in advance! Sending a hug.

I was diagnosed with DCIS / Stage 0 in 2007 Even though it was stage 0, the DCIS comprised a large area, I followed the advice of my radiologist and the pathologist, both of whom recommended a lumpectomy followed by radiation. I didn't take any follow-up preventive medication of any kind. I would have found it much more stressful to be continually aware of the DCIS remaining in my breast than to suffer the temporary discomfort of surgery.

There are never any guarantees, of course, but now, 19 years later, I am comfortable that I made the right decision. I wish you all the best!

Thank you for your reply! And congratulations on your 19 years!
That is the way I am leaning. It is making me stressful and anxious.
If you would not mind, I have a couple of follow up questions.
Did / Do you still have to continue the every 6 month mammo surveillance on your breast?
And can you explain what your recovery time and process & restrictions were?
I am trying to mentally prepare myself. 🙏
Thank you for your time!

@orienteer
Thank you for responding!

I am sorry for the location of your DCiS. That is a lot more challenging.

My stage 0 DCIS is in my Right Breast and was found thru biopsied suspicious calcifications in the lower outer quadrant ( face of clock dial area between 3-6 o’clock)
I get tomo mammo on affected breast every 6 months. They have found suspicious calcifications,
( meaning linear or grouped) twice in two years. Every Dec I get a tomo mammo on the affected breast and every June both breasts are imaged via tomo and ultrasound. When newly found suspicious calcifications are found, it constitutes another biopsy of the newly suspicious calcifications to see if cells broke out of the duct and spread to the tissue.
My July 2025 biopsy was negative. This past June they found more suspicious calcifications closer to the original diagnosis area, so I get another biopsy on Aug 4th.
Each time my stress and anxiety builds. This makes me lean again more toward lumpectomy with out doing the 5 yr hormone treatment. I mean, How many biopsies & clips am I gonna get. This new clip will make 4. ( I had a biopsy and clip placed in 2005 which was also benign)

The issue is, if I get the lumpectomy, and more suspicious calcifications show up later, then what, more biopsies???
It is a double edge sword.
It makes me crazy.
I will stay positive that the new biopsy will be benign.
I will continue to weigh my options after the new results.

The COMET trial
was only a two year trial . They do not have enough data years bjt what they have found out makes one pause.
They diagnose it as IN SITU , and say
“ Even though the abnormal cells are contained and cannot spread outside the breast, doctors generally recommend treatment for DCIS to prevent it from progressing into invasive breast cancer.“
None of that makes sense to me.
If it dirs not spread outside the breast (other organs, I guess) then how can they also say it could become invasive?
This is what is confusing to me.

One thing is for sure:
I so very grateful for finding this blog site. It helps to know I am not alone!
I am highly receptive to further communication!

@tapgirl, thanks so much for sharing, and it’s great to hear you’re a long term success story—how uplifting!! ❤️Do you mind me asking if your small DCIS surgery required reconstruction? Did they remove nipple? For me, it’s very distressing that doctors seem to have no issue with saying I should have radical surgery—they said it would be “partial mastectomy” because of nipple and areola removal for a 1 cm stage 0 DCIS. It is situated right near there, and they can’t get clean margins any other way. So, I’m determined to try all options first, but it’s incredibly scary.

Scary for sure. My situation was very different. My surgery encompassed a fairly large area, but it was near the base of my breast, not close to the nipple. The operation was a simple removal of the suspicious area; no kind of reconstruction was required. I wore a ComfortSling beneath my breast during radiation, so I didn't suffer any significant burning, but the radiation did leave me with a kind of weakness and exhaustion I'd never experienced before. I opted out of any kind of follow-up oncology, including tamoxifen (I don't remember why). I did have 6 month mammo and/or ultrasound for several years, but the stress of wondering "if" eventually disappeared. Now that I'm older (87), my breasts are less dense and I only have annual mammo. Good luck!

@orienteer

Appreciate the kudos but
I have not undergone any breast surgery as of yet. Just several biopsies.
I am still on the fence about it.
Will know more after my next biopsy on Aug 4th.

I was diagnosed with DCIS ER+ grade 3 in 2021. It was diagnosed by biopsy after watching suspicious microcalcifications for 2 years. Because of the grade 3 status I opted for a lumpectomy with radiation and hormone therapy. When the lumpectomy was done, the pathology returned with a 4 mm invasive IDC. Even though it was small and stage 1, it was also HER2+, which changed my entire treatment plan to include chemo and Herceptin.
My lesson learned from this was that I should have had an MRI after the initial diagnosis by biopsy. Right now I am done with all treatment except for another year and a half of hormone therapy. I currently get a yearly mammogram and yearly MRI spaced 6 months apart.