DCIS and lymph node involement??

[Donna68]

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

[Ezzie1698]

Hi Belle,

It really does sound like you have had a raw deal with your diagnosis.  I was worried at one stage that I might have something similar since after vacuum assisted biopsy they found a microinvasion.  There was only one and 0.5mm.  My DCIS was large (35mm on mammogram but 50mm following surgery) and high grade so I was fully expecting something worse when I got my results post-op but nothing else found.  I sometimes wonder if they really checked it all when I am having a rare down moment.  I hope your appointment on Wednesday goes ok and you get some good news for once.  Fingers and everything else crossed for you. Ezzie. X

[Belle15]

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.

[Ezzie1698]

Hi Yvonne.

I totally understand your predicament, the confusion and the worry which you now find yourself having to endure. I was in your shoes just 3 months ago ... but it does get better.  Here's my story which is just a bit more straightforward than Belle's.

I had a mastectomy for DCIS at the end of May.  Mine was large but did partially show up on mammogram.  I also had two lymph nodes taken away for checking as part of a sentinel lymph node biopsy.  This was done as a precautionary measure with my mastectomy as it is more difficult to do later on if needed.  It does not necessarily mean that the cancer has already spread unless they have told you otherwise.

My operation was three hours or so (from walking into theatre to coming round and having an intelligent conversation in recovery) and I was in hospital about 24 hours.  I could have been done as a day-case but my carer for the first 24 hours didn't fancy fetching me out and looking after me that evening/night.  My results were good and I need no further treatment/medication.  I opted to have delayed reconstruction which I am waiting for now.  Have you been given any information on reconstruction yet?  If you want it of course.

I have been very fortunate and have made a really good recovery.  If it wasn't for how I look with no clothes on, you would never know what I have been through!

If you want to ask me anything else.  I am only too happy to help.

Ezzie. X

[Belle15]

Hi Jas. That's what I think too. So clearly there was some invasive cancer that wasn't spotted pre surgery. ☹️

[Belle15]

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.

[Yvonne dawes]

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

[Jas58]

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 😌

[Belle15]

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.