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Narrow DCIS Margin for high grade
I am 2 years post lumpectomy for ER+ Her2- IDC/DCIS Stage 1, No node, Grade 3 breast cancer. In recently looking over my report I realized that the margin for DCIS after lumpectomy was < 0.01 and now I’m worried. I had radiation, but had a known the margin was so close (recommended 2mm) I would have asked for another surgery to achieve a better margin. I am so scared now. Has anybody else had this happen? Next steps?
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I had 1 mm margin. The comprehensive cancer center oncologist said I did not need another surgery as long as I did radiation. But they would do a second surgery if I didn’t have radiation. Other considerations were that the 1 mm margin was a “focal point” meaning it was not along a long edge of the cancer. I had DCIS grade 2, stage 0. I only had 5 days of radiation.
For peace of mind, can you request more info from your oncologist? Details about why no extra surgery was recommended? You might feel less worried if they can explain the decision.
If you get push back, and someone on the oncology team will not talk to you, I always find when I speak their language they are more likely to respond.
Your question might be, what was the criteria used to determine that they did not need to follow NCCN (National Comprehensive Cancer Network) guidelines on safe margins for surgery for IDC/DCIS?
There may be a very good reason. Part of the reason I chose to not have the second surgery if that the 1 mm margin was on the skin side (anterior). Which meant when they went in a second time they would be further thinning the fat cells lining the skin. I was concerned that this would make it more likely that I would have skin damage from radiation if the skin was thin. And, I had already decided on radiation before I found out about the margin.
I’m not sure if my situation helps - but know that some of us did have small margins and no second surgery. I’m 3 1/2 years post treatment, on 5 mg Tamoxifen.
Thank you for your response. Yes, your information was helpful! I have read both views via the internet for what it’s worth, but hearing personal cases helps. I am post-menopausal so I know that was a consideration as well, I know that the radiologist told me the last week of radiation (5 weeks total) was targeted. I just wish I had been given the full explanation because at that point I didn’t know the questions to ask.
@ssc7 I’m 20 years past menopause! I’m 71. I was given choice of AI or tamixifen. I didnt have high risk for uterine cancer or thrombosis.
Started with 20 mg, 3 month in had bad headaches 24/7. Not migranes. Had a brain MRI, findings: nothing remarkable. Haha.
Switched to 5 mg no problems so far, although TSH is rising.
I too had lumpectomy very small idc one margin less than 1mm touching I was told as long as margin not touching I did not require 2nd surgery- from Wht I understand its position and if lymph nodes are involved and stage- my genomic testing (3) on Onco score, 10 KI-67 BRCA Negative- first radiologist said oh this margin is close not touching he recommended 15 rounds of radiation - I went for 2nd opinion to Miami Sylvester they are tops saw head radiologist breast she took every extensive test and said I would be treated with target radiation 5 days - I had this on Oct went for post op mammogram Jan all perfecta- I now go for 6 mos full mamogram & sonogram in July. Studies are out there genomics also constitute what treatments whether margin close or not as long as Not touching.
Thank you for sharing your experience! I did have 15 rads and then a week of targeted so I guess that’s why the surgeon did not recommend another excision. No node involvement, 20 Ki, Stage 1. I guess my concern was grade 3. It helps to hear another similar experience!