2x DCIS, now waiting on results of biopsy from axillary tail

ausra

Hello All.. I'm new to posting thought I have followed this and many boards since being diagnosed with DCIS in Sept 2016.

Here's what's going on and why I need to hear from those in a similar boat. Have any of you encountered similar circumstances where "possible reactive lymph nodes" have been documented but no follow up?

My first BS was recommending unilateral mastectomy from the outset but I wanted to try breast conservation. Also wanted to have an MRI done before my first surgery as I have dense breast tissue. Long story short, MRI didn't get scheduled and I went for my lumpectomy in Oct 2016. Margins were very close. Pathology stated my DCIS is high grade,, micorpapillary and clinging type with focal necrosis, with microcalicifations present. No invasion was present. I need to point out that no SNB was done as it's not the protocol in Canada so it seems.

MRI was finally done in Nov 2016. This showed possible benign postsurgical changes and prominent level 1 lymph nodes, likely reactive. Ended up having a biopsy and tumour board agreed it was DCIS so additional surgery scheduled (with a different BS) following receipt of genetic testing which was negative.

Second lumpectomy/re-excision done in Feb 2017 by new BS. Pathology came back positive for DCIS. Lots of it. Again, no nodes tested.Moved onward to radiation and began taking Tamoxifen again (had to stop for surgery).

Fast forward to September 2017.Accepted into a study for new surveillance techniques. MRI showed questionable area. Close look ultrasound and biopsy done. Results of biopsy negative though ultrasound documented abnormal lymph node, which was recommended for biopsy at the discretion of the BS. Not done. This after several imaging tests since Nov 2016 mentioned prominent level 1 lymph nodes.

Given that I'm the third in my family with BC, first to be pre-menopausal, I'm a bit leery, especially since how things have gone so far. I just can't help the feeling that something has been missed.

In Sept 2017 I had a sore location in my underarm. This was finally biopsied in early Dec (yup a few days ago) at my insistence. Radiologist claimed they saw no abnormal nodes. ?! I could clearly feel a lump in my axial area (so did my oncologist though they said it was "small" and :probably nothing to worry about".) I'm sorry but it hurt like crazy and was getting worse. Was waking me at night and could "feel" it when my arm was down. Was also palpable. We decided to do another ultrasound again to see what had changed in 3 months. Ultrasound gave way to an immediate biopsy on something the Radiologist was not certain was a lymph node. Despite all the prior indications, it was said that my nodes were fine. ?? Now I wait. Again.