Misdiagnosis possibly

Hi Underwatergirl and welcome to the forum.  I have come across a number of cases on here where after initial surgery something more or different was discovered.  It's not uncommon and happens because it's not always easy to get the full picture before surgery.  

Invasive cancer isn't automatically anything to worry about.  I had invasive ductal carcinoma and there was no spread to lymph nodes and my treatment was surgery, radiotherapy and hormone blocking tablets.

To test to see if the cancer reached the lymph nodes they operate and remove a number of lymph nodes (4 in my case) and examine them for signs of cancer.  After surgery you are given arm exercises which you must do every day so that you regain full arm movement and to prevent cording.  The exercises are a bit painful but eventually things go back to normal.

Even if cancer cells are found in the lymph nodes it doesn't mean that they have spread anywhere else so again it's noting to automatically get worried about.

Hopefully the results come back and you don't need to have any lymph nodes removed and tested.

I was warned that my surgery biopsy might reveal invasive cancer cells - I had DCIS which is non invasive.  I was told they try to get accurate diagnosis by taking multiple biopsies ( I had 12 samples from 2 areas of breast calcifications) but only when full area is analysed will they get a full diagnosis,  my DCIS was upgraded from intermediate to high grade DCIS after surgery.  

Hi GodWilling, thank you so much that is reassuring. It was such a shock after all discussions I had this scenario was never raised. 

Thank you I just wished I had been prepared . It was not even discussed. With me. I hope you are doing well. 

That's a shame they didn't discuss and tell you it's common for treatment to change as treatment progresses.  My surgeon gave diagnosis- I was recalled from first screening, and she was very straight.  I liked that though she did remark "you are taking this very matter of factly".   I'm retired now but at the time I was working and used to lots of meetings which I think made me switch on my fact gathering brain. When I got in car I completely broke down.   I think they were concerned about my lack of emotion as BC nurse offered to come see me at home 2 days later.  I've not many anyone else offered this.  My daughter was home from uni that day and she had some questions for me to ask.  I found this so useful.  I was told I might need hormone therapy too after surgery if biopsy results different but I didn't need.  This was 2015.  I've had annual mammogram since finishing treatment.  

My right breast cancer was discovered during bilateral lumpectomies. They thought there was just a tiny DCIS on the right side, but during surgery they realised all the scans and biopsies had missed a 4.5cm area of pleomorphic invasive breast cancer. So six weeks later I had to have a mastectomy. I knew there was a tiny chance this could happen but didn’t think it’d be me! I had to wait over 2 weeks for the pathology that time, and another 2 weeks after the mastectomy but am now cancer free. Just waiting for some radiotherapy.

Hi Anabrock, nothing quite prepares you for the curve balls .   I am glad you are now cancer free that must be such a relief. Good luck with the rest of your treatment.

Hello, I think it is because they cannot be absolutely sure until they have looked at the mass taken at your lumpectomy. My first WLE went well, but on my follow up appointment was told they found DCIS and so a second WLE was performed. Following that they thankfully got clear margins. I suppose I'm grateful for the thorough biopsies, but found it hard at the time as I felt I was going backwards. I was diagnosed with invasive breast cancer.