Left Mastectomy for DCIS stage 0– 67 years old and getting a 3 rd opinion on radiation for a 0.7 mm spot near or close to the margin?

[crunchygranolababy]

okay. Dr.s are all giving me different percents if I opt out of scary 5&1/2 weeks of photon RT..Very confused and delved into so much research since November about Radiation-margins-tamoxifen and the toxic effects of these protocols..If any one can relate. Please advise. Thanks! Jill🙏

[ROCgal]

Have they offered you surgical options en lieu of radiation/medication? I was diagnosed with DCIS IN 2021 and opted for a mastectomy, which let me opt out of any radiation or aromatase inhibitors . Might be worth asking, if you are comfortable with the surgery…

[crunchygranolababy in reply to ROCgal]

I had a Left Mastectomy-DCIS-0...(pre cancer)...maybe I needed a 2nd opinion then.....

I was told I have a 0.7 mm spot close to the margin..not deep--however each Dr. has a different thing to say about this in terms only for me to get 6 weeks of radiation...but NO been doing research galore- cause it felt wrong to sucumb to this....The 3rd radiologist assured me that it was pre cancer and is doing the DCISision Test just to see,,,,but she validated everything I have been feeling, hearing and researching...that I do NOT need radiation or that Tamoxofin which was perscribed to me...No Thanks...I'm following my original path to have reconstruction next month.....Ty

[QuietTent]

I was very anxious about radiation and my experience was that it wasn’t bad at all. Obviously everyone has different reactions to it, and there are rare longer term risks of other cancer. But if you are a fit and young 67 year old then you don’t want the cancer to come back in 5 or 10 years because some cells are left behind. I’m not totally clear on whether you had a mastectomy already, but if so and if the DCIS was close enough to the edge of that region that they are recommending radiation, then it does significantly reduce the chance of a recurrence. Unfortunately, while being healthy and fit and having no family history is great for prevention of new unrelated cancers and helps you recover, once we get a diagnosis more direct and powerful medical tools are needed to stop the spread of mutant cells.

[Jack2019]

I was in a similar situation as yourself in 2018 and then again with the other breast in 2020. Both of mine were invasive and stage 1. I had the surgery which is obvious. I had many discussions with the radiologist because my second tumor was on the left side and I was concerned about radiating the heart. He was wonderful, they mapped the treatment and he assured me the heart would be out of the treatment zone. He also had me doing treatment in prone position which helps direct the beam to the treatment area more safely. He did say that likely I would be fine if I chose not to radiate, because it was small, the surgeon took a big margin and the 3 nodes were clear. I chose to have the radiation. I never had any reaction to my radiation. I was given 18 whole breast and 5 targeted sessions. I was terrified of radiation but more terrified of recurrence. I did refuse medication in 2020 because of the thrombosis risk, and the medication did not work for me as I was on it when I got the second event. I was 60 in 2020. One thing I discovered was that the medication is less effective if your carry belly fat. I wish someone had told me when I had my first event, I would have dropped the weight. Sadly there are no certainties in any choice we can make, we can empower ourselves with information on the good, the bad and the ugly. We have to decide the way forward as an individual given a diagnosis so common in society but so terrifying to us. No regrets. Keep up with screenings.

[Junnee]

I am in Canada and was diagnosed with DCIS in 2023 and got a masectomy, so there was no need for radiation. But before doing so, I did a lot of reading. I found the following passage in The Intelligent Patient Guide to Breast Cancer book, 6th edition, by I. Olivotto, K. Gelmon, D. McCready, and U. Kuusk. It says :"For some women with relatively small areas of DCIS, it may be possible to save the breast and avoid radiation therapy. For this approach to be successful, the cancer should be less than 1.5 cm in diameter on both the mammogram and pathology and the cancer should not be high-grade (very abnormal-looking cells with necrosis) and to be confident that the DCIS has been completely removed, there should be at least 1 cm of normal breast tissue between any ducts containing DCIS and the edge of the excision specimen. Radiation therapy will reduce the risk of breast recurrence further, but because the risk of recurrence is relatively low with surgery alone in these cases, only a few women among every hundred treated would benefit from the radiation therapy."

[crunchygranolababy]

I agree! I got a third radiologist opinion and she told me.." I do not need radiation!" She said I had pre-cancer DCIS- Stage 0! I am sooo relieved and not really believing this since the BC surgeon was sure that it would spread or come back and I needed radiation? So did the medical Oncologist tell me it was BC... and if I forgo radiation I would need to take Tamoxofin-20mgs!...What?! I am 67- healthy and feel lied to by 2 radiologists-and 2 Dr.s.....But I fel good and on with reconstruction....Yay... Good Day to you....

[Junnee]

You may wish to ask your doctor how they define margin. Many use 2 mm, some use 1 mm, some use 5 mm. The article I cited above says "there should be at least 1 cm of normal breast tissue between any ducts containing DCID and the edge of the excision", which is likely larger than any margin your doctor is using. Myself, I took tamoxifen (for my other breast due to a family history of BC) because there I didn't have any side effects to it, and its supposed to reduce the chance of recurrence by around 40%.

[crunchygranolababy in reply to Junnee]

Are you a Doctor? I had DCIS stage 0 pre cancer!

[crunchygranolababy]

Are you a Doctor? DCIS!

[Junnee]

I am not a doctor. I also had DCIS, and did reading on it. Before I had a masectomy (June 2023), I had a lumpectomy (Feb. 2023), but did not have clear margins, so had another lumpectomy (March 2023) - still didn't have clear margins, so then elected to have a masectomy. That's how I learned about the importance of how to determine margins. When I got a masectomy, they did testing of the whole thing they took out and found another DCIS which was not found in the mammogramss, so I'm glad I went that route.

[Junnee in reply to Junnee]

By the way, DCIS is by definition stage 0 pre cancer, i.e. all DCIS is stage 0 precancer. I am a lawyer so read a lot on the internet (mostly stuff outside of forums), and 2 books on breast cancer.

[Junnee]

Sorry, I had a typo in my earlier post. The article I cited above says "there should be at least 1 cm of normal breast tissue between any ducts containing DCIS and the edge of the excision".

[crunchygranolababy]

well I guess I better ask that question — they all different things about the “margin”.