Hi Soocee

I understand your frustration and confusion.I too was diagnosed with lobular breast cancer and told no spread to lymph nodes but sentinal node taken was positive.They removed what they thought were two further lymph nodes but they were in fact just tissue.

When I ask the oncologist how do we know its not in any other nodes , he said "we don't " that is why we are giving you chemo and radiotherapy.

Lobular is harder to detect than ductal so this maybe part of the issue.I think scans for spread are done only if grade 3 or HER+ Try and take comfort from the fact that the positive nodes have now been removed and maybe ask your breast care nurse to explain further if you are unclear why they are recommending certain treatments.

Fortunately chemotherapy was very manageable for me with not many side effects.I am halfway through radiotherapy and started hormaone therapy.

There is also a new drug being offered to hormone positive cancers patients with large lumps(mine) or more than four nodes which cuts the risk of recurrance.Its called Abemaciclib and only just being offered by the NHS for primary breast cancer, as before it was only licenced for secondary breast cancer.  

Hope that helps a little x