@roylej - welcome to the club that no-one ever wanted to join! :(
OMG! It sounds like your surgeon (and possibly breast care nurse) are not very sympathetic to your plight .... I am sure they could/should be able to give you more information!
Feel free to tell us some more of your story so far - we have a few who've not had successful recons (was your recon/implants removed?) .... they may be able to advise you better with a bit more info ..... I know that those with implants don't usually have mammograms due to the chance of them bursting - even if there IS still flesh left behind .....
I am lobular (and mine was totally missed on the Mammogram & it was 'only just' picked up on the Ultrasound) - but I did not have a mastectomy .... and yes it is the sneaky one. Sadly, Lobular can also have a higher recurrence rate than other types of BC, even after a mastectomy (unfortunately) as not ALL flesh is necessarily removed from the chest wall.
Re knowing if it has recurred .... Definitely keep an eye out for odd lumps & bumps - You would also need to remain vigilant of any persistent aches & pains in your body that last longer than a few weeks - and if you DO notice anything untoward - ring your Onc and get bone density scans & MRI/CT etc, and get checked over by them as well.
Check out this post from 2019 (so relatively 'current') ...... when you are on the Discussion Page, you can put in the 'search bar' the words you want searched - I put in "Yearly Scan Double Mastectomy"
https://onlinenetwork.bcna.org.au/discussion/20422/looking-for-information-re-scans-or-ultrasounds-after-having-double-mastectomytake care & all the best .... xx
