How often do they get Staging wrong before surgery

Staging can't be finalized until surgery to remove tumors and biopsies of lymph nodes

most of the times the docs get clinical staging right but they can’t be sure till surgical biopsy results are in. In my case, clinical staging was 1 but post- surgery biopsy revealed more than they were expecting and stage was upgraded to 3a after additional scanning was done.

MRI before surgery did not show anything in lymph nodes

Yes unfortunately you don't know until you have the surgery. My doctors were all wrong from the get go so I ws shocked every step of the way with each result as I didn't know any better. I was told by radiologist it's small and tiny 6 mm's. Had MRI and the report echoed doctor small 6 mm's with no lymph node involvement.

During surgery 1 sentinal node showed micromets. Post surgical pathology showed tumor was 3 cm's So more than three times size I was told and there were 2 of 4 sentinal al nodes with micromets. I asked odds of further nodal involvement and both oncologist and surgeon said slim to none. Well wrong again. I made them do a full Axillary Node dissection and surprise again 2 of 14 additional nodes were fully positive and loaded with cancer. Not one doctor along the way told me that what they initially thought could be wrong. I thought I was stage 1a and in the end 3a. I wish they had never said anything at all in the beginning about size / lymph nodes status and justbwouldve said we don't know. I feel like some treatment and timing decisions were made based on the initial 'assumptions' that were all incorrect. I would rather have gone in not assuming anything as the shock would have been better to handle. I would've prepared for the worst and hoped for the best and instead I had one surprise after another. Never ever again willl I take what a doctor says as word.

First and foremost we all understand your fear factor. It’s the one thing other than a BC DX we all have in common.

Let me add my story to the mix. I had a lumpectomy and when the Path report came back it showed a micromet in the SN. My BS was surprised. I was stunned.

Also my oncologist said my BS staged my tumor incorrectly. It should have been 1b instead of 2a.

Bottom line is obviously they can get it wrong at least initially.

Diane

Hi BadLuck,

Did they have any other strategies to try to protect your heart?

They never even mentioned the deep inspiration breath hold technique to me at all. I did slot of reading & then discovered this technique that Mayo & other clinics use to protect the heart for patients getting radiated to the left breast. They told me they aren't set up to do that but may start that procedure around the first of January. I also read about another technique where the patient can lay on their stomach & the breast hang down through an opening where which is safer than the old traditional way of laying on your back with arms up over your head & head turned sideways.

LeesaD - the same thing happened to me and I also wish they had just said they didn’t know - or that anyone had even suggested things could change so much. My BS was so confident that I was a 1A With no nodal involvement. She couldn’t even look at me when my surgical path came back with a bigger tumour and 10 (!!) positive lymph nodes. Just like you said - I would have so preferred to prepare for the worst and hope for the best instead of getting knocked down over and over again with bad news.

Kymberli36 - as others have said, the waiting is the worst part. Once you have all the results you can move forward with a plan. Until then it’s so hard. Sending you lots of support and comfort while you wait and hoping for good news