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DCIS in SITU stage 0: Choosing next steps

Posted by thegypsy @thegypsy, Jun 30 7:04am

I was diagnosed with stage 0 DCIS in Situ, Hormone and Progesterone positive.
I have been doing 6 month surveillance therapy for almost 2 yrs. Since diagnosis in 2024, Have had suspicious micro calcifications in 2025, needle core biopsy and benign findings.
Recent June 2026 Tomo found more suspicious calcifications
near original diagnosis site. Getting another needle core biopsy in August 2026.
By choice, I am not on any HR therapy as I have just recovered from MVD brain surgery after 4 years of every complication.
I am not mentally ready for hormone therapy or a lumpectomy.
I just missed being a candidate for the Comet re: over treatment of DCIS in Situ via lumpectomy, radiation and 5 yr HR therapy vs: active monitoring.
I have no family history of breast cancer and am now turning 65 in Sept.
My breast surgeon agreed with my active surveillance and my oncologist has a highly negative mindset and is pushing lumpectomy.
I am hopeful my biopsy this August will be benign as well.
The anxiety of getting biopsies and “how many more clips” makes me lean more towards a lumpectomy at my age but without the HR treatment afterward. I mentally cannot go thru more side effects after my 4 yrs recovering from every side effect after the brain surgery ( Micro vascular decompression surgery from Hemifacial Spasm) .
All experience, strength and hope to assist me in choosing next steps would be gratefully appreciated.
Alice in Florida

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thegypsy | @thegypsy | Jul 9 11:40am

Thank you for your words of wisdom!
Together we can make it!!! 🩷

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sequoia | @sequoia | Jul 10 8:32am
In reply to @mimi09 "Many of us have learned how important it is to be your own advocate…the hard way!..." + (show)
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Many of us have learned how important it is to be your own advocate…the hard way! I’m now 80 and never wanted to be a doctor; we were taught waaay back then to trust and believe our medical professionals. Now it’s changed to buyer beware/be your own advocate.
Perhaps this is a newer, better attitude, but still difficult for those of us w/o any medical training! Having this discussion in my inbox each morning is a big help. And so is finding a doctor who will take as much time as is needed to bring me up to speed on BC treatment advances. I believe and trust my new surgeon. Not so much the old one who only wanted to cut! Unfortunate she viewed me as a number, a statistic. New doc is a human being who connects with me on more than the medical level, so I trust and believe, but still verify.

Keep asking questions until you feel comfortable with whichever decision you make for yourself. We need to pay it forward until every patient is heard while armed with info that is clear and understandable to the ‘average’ patient. Hugs to you as we walk this path into our new normals together!!

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@mimi09 very true words. Let us all stand together and stay strong 🥰

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roses2 | @roses2 | Jul 11 11:18am

Hi Alice,
I was diagnosed with DCIS stage 0 in June 2025. My surgeon pushed for surgery. An MRI indicated that I had more than one lesion: 3 in one breast and one in the other. I realized that the suggested treatment would be a mastectomy, which I was against. I chose to avoid the surgery. By researching alternative treatments, I came across Cryoablation which freezes the lesions. I contacted Dr. Hania Bednarski in South Carolina, who has been performing this procedure for years. She requested that I have more tests done. She did a telehealth visit and showed me the imaging results, indicating that 3 of the 4 were not visible, and only one area seemed to indicate abnormal cells. (This was where my breast clip was.) Her analysis was that my lesions were adnormal, but may not be cancerous, so I have chosen to monitor them, as you are doing.
Good luck with your prognosis. I will keep you in prayer for your healing.
Barb

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1 reply
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georgemc867 | @georgemc867 | Jul 12 11:47pm

I had zero stage DCIS in 2019. It turned out ot be abnormal cells not cancer but was 100% ER+
I had a lumpectomy and was originally advised to take tamoxifen. I was 67 . I chose not to take Tamoxifen.

Fast forward 4.5 years later....I had grade 1A .7 mm lump in the same breast with 91% ER 1% PR and HER2 so I had another lumpectomy, radiation for 5 days, chemo weekly for 13 weeks and Immunotherapy 25 times all over one year.

Now I am taking AI's but have changed to Tamoxifen. I just passed my 2 year mark. And am considering stopping due to so many side effects. I have always wondered if I had taken the Tamoxifen the first time, if I could have prevented the second lump. When I asked my oncologist if he would suggest his Mother take tamoxifen the first go round, he said probably not. So I did not.

Hopefully lifestyle, diet and exercise will keep cancer from re-occuring. I see my surgeon 2 times a year and have diagnostic mammograms annually. It has been 2.6 years and so far, so good!
It is so hard to predict what is best. Just go with your gut feeling!

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1 reply
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thegypsy | @thegypsy | Jul 18 8:10am

Thank you so much for sharing your BC journey with me.

Yes, it is a terribly cunning disease.
We seem to choose what we feel is best and we have no control over the outcomes.
I empathize with your second guessing yourself and the what if’s.
I feel many of us do this to ourselves.
All of these decisions are difficult and mentally challenging.
You are a brave a courageous survivor.
Keep defending your health and well being🩷

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thegypsy | @thegypsy | Jul 18 8:33am
In reply to @roses2 "Hi Alice, I was diagnosed with DCIS stage 0 in June 2025. My surgeon pushed for..." + (show)
Profile picture for roses2 @roses2

Hi Alice,
I was diagnosed with DCIS stage 0 in June 2025. My surgeon pushed for surgery. An MRI indicated that I had more than one lesion: 3 in one breast and one in the other. I realized that the suggested treatment would be a mastectomy, which I was against. I chose to avoid the surgery. By researching alternative treatments, I came across Cryoablation which freezes the lesions. I contacted Dr. Hania Bednarski in South Carolina, who has been performing this procedure for years. She requested that I have more tests done. She did a telehealth visit and showed me the imaging results, indicating that 3 of the 4 were not visible, and only one area seemed to indicate abnormal cells. (This was where my breast clip was.) Her analysis was that my lesions were adnormal, but may not be cancerous, so I have chosen to monitor them, as you are doing.
Good luck with your prognosis. I will keep you in prayer for your healing.
Barb

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@roses2

Thank you Barb for sharing this with me.

I am so proud of you for looking deeper into your diagnosis!
Your due diligence paid off in the best way!
I have never heard of Cryoablation.
I will definitely research this further!
I feel it is always best to have more than one opinion before getting surgery when one is unsure of the nature of this low stage DCIS.
I am so grateful to all who participate on this blog. We learn so much from one another’s
personal experience.

I will hold you in prayer as well and very good luck to you with your prognosis.

Alice in FLA

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1 reply
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sue417 | @sue417 | Jul 19 9:00am

Hi
I was diagnosed with dcis in 2023 I had a lumpectomy and they did it by taking my nipple off so I have no scarring on my breast. They then put the nipple back on. 2 months later I had lymph node surgery and they only had to remove one and it was clear. Then after the pathology they discovered I had a microscopic break in one of the walls so I had 20 treatments of radiation and I did not take an aromatase inhibitor I am 2 years out clear so far it took quite a while to get over the fatigue from the radiation I'm not going to lie it was a rough year I'm pretty much back to normal but I do monitor how busy I get because I can get fatigue easier. The choice to not take an aromatase inhibitor was okay by my oncologist because I already have osteoporosis with fractures in my spine. I was 64 when I had this discovered by my normal mammogram check up

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jjdeakin | @jjdeakin | Jul 19 9:35am
In reply to @georgemc867 "I had zero stage DCIS in 2019. It turned out ot be abnormal cells not cancer..." + (show)
Profile picture for georgemc867 @georgemc867

I had zero stage DCIS in 2019. It turned out ot be abnormal cells not cancer but was 100% ER+
I had a lumpectomy and was originally advised to take tamoxifen. I was 67 . I chose not to take Tamoxifen.

Fast forward 4.5 years later....I had grade 1A .7 mm lump in the same breast with 91% ER 1% PR and HER2 so I had another lumpectomy, radiation for 5 days, chemo weekly for 13 weeks and Immunotherapy 25 times all over one year.

Now I am taking AI's but have changed to Tamoxifen. I just passed my 2 year mark. And am considering stopping due to so many side effects. I have always wondered if I had taken the Tamoxifen the first time, if I could have prevented the second lump. When I asked my oncologist if he would suggest his Mother take tamoxifen the first go round, he said probably not. So I did not.

Hopefully lifestyle, diet and exercise will keep cancer from re-occuring. I see my surgeon 2 times a year and have diagnostic mammograms annually. It has been 2.6 years and so far, so good!
It is so hard to predict what is best. Just go with your gut feeling!

Jump to this post

@georgemc867
I was surprised to read of your reoccurrence and am truly sorry to hear of your dealing with it all over again. There was s no guarantee for any of us. I was diagnosed with DCIS 22 years ago. Dr at Mayo performed lumpectomy. He suggested radiation and 5 years on Tomoxifen which I did with very little issues. I have been cancer free since with yearly mammograms.

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1 reply
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hsminc | @hsminc | Jul 19 10:20am

DCIS is considered a benign disease but it is not always so benign. I had a lumpectomy for DCIS but the final pathology turned up a malignant invasive carcinoma. It is tiny but ER/PR and HER2 negative which makes it triple negative - a malignant malicious and very scary disease. Since it was believed to be DCIS at the time of surgery and frozen sections, no lymph nodes were sampled - so guess there
Is a 10 percent chance that malignant cells traveled to the lymph nodes even though the lymph and vascular pathways showed no sign any cells escaped.
One source said that this the of cancer cells do not travel to the lymph nodes but are more apt to travel to the blood stream. Anybody know??

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gtrgreeks55 | @gtrgreeks55 | Jul 20 7:17am
In reply to @jjdeakin "@georgemc867 I was surprised to read of your reoccurrence and am truly sorry to hear of..." + (show)
Profile picture for jjdeakin @jjdeakin

@georgemc867
I was surprised to read of your reoccurrence and am truly sorry to hear of your dealing with it all over again. There was s no guarantee for any of us. I was diagnosed with DCIS 22 years ago. Dr at Mayo performed lumpectomy. He suggested radiation and 5 years on Tomoxifen which I did with very little issues. I have been cancer free since with yearly mammograms.

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@jjdeakin
I also had a reacurance 15 years after I had not gotten any meds the second time I did had radiation and anastosil for 5 years and now I am hoping that it will not come back because this time it will be “off with the breast!

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