Hi. I’m 2 weeks post surgery for DCIS. I had a right Mx (& reconstruction) and SNB. I was told in recovery that they had found 2 out of 3 positive lymph nodes and so they had taken all the others that they could see. On diagnosis I was told that it was non invasive and the MRI had later confirmed this. That’s why I’m now confused and anxious that it had in fact been found in the lymph nodes. I get my results from surgery on 9th Aug and I guess it’s only then that I’ll know what’s going on. Has anyone else had a DCIS diagnosis and then found to have lymph node involvement? I’m told it’s very rare.
Hi Belle
I’m no expert but I don’t think you can have lymph node involvement without some invasive cancer. Often this is found within dcis at pathology stage? I’m sure someone with more expertise can confirm this. Best wishes ?
Iv just been told Iv got DCIS. And I’m having a mastectomy. And was told they are taking out 2 lymph nodes too. I had been leaking from my left nipple. But all my mamagram and ultrasound were normam. I’m all confused too. It was said to me it’s rare too. Not sure what it all means.
How long was the operation ? and how long were you in hospital. I hope all is good for your results
Hi Yvonne, my ultrasound and mammogram wasn’t normal as my DCIS was very extensive. My surgery was longer than anticipated as they were not expecting the nodes to test positive. As they tested them whilst I was still under general, they then decided to removed as many lymph nodes as they could find. All in all I think I was in theatre for 4 and a half hours. Longer than they expected but it was done in one go. I was meant to be a day patient but due to the length of surgery I had to stay in overnight. I went home the following day.
Maybe it’s rare for nothing to show on mammogram. I know that the younger the breast tissue, the trickier it is so identify I’ve heard. I’m 35 but mine was very clearly there.
Good luck with your surgery. I was dreading it but 2 weeks on and I’m out and about. You’ll get there.
Hi Jas. That’s what I think too. So clearly there was some invasive cancer that wasn’t spotted pre surgery. 
Thanks for this Ezzie. My story was meant to be just like yours. Except I had immediate reconstruction. The consultant thought that I wouldn’t need any further treatment probably but that was before the lymph nodes were found to be positive.
I’m glad that all went smoothly for you.
I had an expander implant Jas if that’s useful to know. Although it still so recent that I’ll only know what the final result looks like once the swelling has settled. But, so far, I’m pleased with how it looks. Much better than my imagination anticipated.
Yes, just diagnosed with Dcis the Dr was sure no node involvement. However one node came back minute cluster of in one node. They are testing it has a negative and said the mastomy is all I needed. However since this is rare i still have to follow up with an oncologist every 3 months. I am so confused and worried. Best of luck to you