I’m 49 and received my breast cancer diagnosis in December. One lump in the upper quadrant, biopsy result suspected invasive grade 2. My operation was 20 January, remove the tumour and take 2-3 lymph nodes was the plan. Pathology results came in on 11February. That wait was the worst !
I was told the picture was very complicated. The original tumour was made up of invasive and high grade DCIS, margins were not clear so they recommended a further incision. The complication came from the lymph nodes. He thought he took two but apparently one turned out to be the tail end of my breast tissue and in that they found more high grade DCIS but this one was not on any of my mammograms, ultra sound or CT. He called it radio occult, basically invisible. He recommended that we go back in and take more tissue. He was honest and said how much he doesn’t know because it doesn’t show up! The whole thing has blown my mind, I can’t find anything that explains this properly to me. I’ve read posts that mention this but always in relation to lymph nodes but the one lymph node they got was clear. My second op is next week. I’m more scared this time round because they seem to be going in blind and taking a stab in the dark on how much to take. Does anyone have any similar experience or advise they can share please? I feel the next month waiting for these pathology results are going to be awful.
Hi @bird-kernow26, I know how excruciating the wait for results and I’m sorry you find yourself in the position of a second op. I didn’t have the same situation but I do know that it’s not that easy to determine the size of DCIS as it’s most often spotted through the presence of micro calcifications which aren’t always consistent across the DCIS. Before my surgery, the surgeon kept getting different estimates of the size/position of my DCIS after multiple scans and biopsies. It ended up being larger than estimated. It sounds like they just want to make sure that they get clear margins for you and there’s no other breast tissue that they haven’t taken into account. It’s positive news that your node was clear.
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Thank you @Pollyann. I am trying to look on the positive side about this second surgery, I already have very small boobs so there’s not much left take but like you say it’s good they are going back to remove as much as possible.
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Hi, I was diagnosed in February last year at 49. I was stage 2 grade 2 IDC and had a lumpectomy and sentinel node plus 2 others removed. Nodes were clear but they didn’t get good margins. They thought it was 3.5cm big, I insisted on a Mastectomy as I couldn’t understand how they missed margins. After my mastectomy (3 weeks after lumpectomy) they said the tumour was actually 5.5cm but they were confident with very clear margins. I also had a CR scan before my second surgery. It was clear except for the remaining tumour. Perhaps ask for a CT or MRI and also insist they explain this radio occult axilla terminology. You have a right to understand what is happening and why. Not sure if any of this helps but I will be thinking of you. You are not alone 
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Thank you @phoenix5, helps a lot to hear other experiences and advice. I feel like clear margins are hard to achieve, I hope you are ok and on the road to full recovery. I’ve reached out to the cancer nurse team for a better explanation this morning so hopefully I get a bit more insight before the op.
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