Misdiagnosed as Fibroadenoma
My wife noticed a family large lump (4cm) on her left outer breast on 8th sept. We immediately consulted a general surgeon who said he was absolutely certain that it was a fibroadenoma. He sent us to get an ultrasound, and the radiologist saw two lesions 3cm and 1cm next to each other, and said they're definitely fibroadenomas. No lymph nodes were noted.
So the surgeon confidently told us that we can deal with it anytime. We asked if we needed to go to a higher centre but he said it wasn't necessary, and we left convinced.
20 days later an excision was scheduled. During the procedure the surgeon noted something wrong in the consistency, and decided to do a wider lumpectomy. He came out and told us it could possibly be a phylloids, but he was confident that he got everything. Needless to say we were quite upset and regretted not taking a second opinion in a higher centre.
5 days later i received the HPE report. Grade 3 IDC with necrosis and LVI, unoriented with closest margin <1mm. Receptors triple negative. Ki-67 65-70%.
Needless to say we were devastated.
We immediately left the state to meet a top breast oncosurgeon. He was very reassuring and spoke about how the case is atypical because neoadjuvant chemotherapy would have been preferred first, but it should not affect the outcome. Regardless he said his plan would be chemo first and then a reexcision to make sure nothing's left of the primary tumour, and LN dissection.
He sent us staging. PET and Mammo picked up a large matted axillary LN 3+cm in size, and the PET also showed a FDG avid subcm mesenteric LN, deemed to be infective/reactive.
I don't think the surgeon was particularly please seening the LN light up.
We met with the oncologist and on 12th October the port was placed and DD AC was started. After the 2nd dose the LN shrunk clinically. I kept asking about pembrolizumab as it's currently the standard of care in the US and UK, but it's still not accepted here.
After 4 ACs the LN had shrunk to 1.6*0.9. I guess we were hoping for more of a response.
MO agreed to add pembro to weekly pacli and carbo. We're 8 cycles through pacli carbo, and my wife's been experiencing some back pain. Im scared it might be sometimes serious like mets, though MO says it's unlikely at this stage. We'll still be having an MRI if it persists.
Im just scared we screwed up right at the start by having the lumpectomy done. No idea what damage that might have done, and we'll never known whether chemo would give a PCR.
There's so my anger at the initial general surgeon for not following standard protocol and recommending a core biopsy. I wish I had read up more at that point and not been convinced so easily.
Did anyone else have a similar experience?