Bugger @Yellow_Daffodil ... that is not the news you wanted to hear. :( Take lots of Deep breaths ... Stay away from Dr Google & just go with what your team is advising you. xx
Where abouts are you? You can add your town/state in your 'profile' ... we may have members nearby who may be able to point you to specific services in your area.
Sadly, ILC is one of the sneakier BCs & doesn't always 'present well' on Mammograms & US, specially if you have dense breast tissue .... and like you, I don't really trust either again, after my own ILC was missed 4 years ago!
I was lucky & only had a lumpectomy, with Rads & then Tabs - so skipping major surgery & chemo - so my recovery was pretty straight forward. Oncotyping will assist in choosing specific treatment relative to the make up of your tumours - I know it is a lot of money, but if it helps pinpoint the best treatment for you, it should be worth it. xx. It can take a while to get the results, depending if they are sent to the US or done in Australia.
Like yours, my Lymph nodes were more painful than the actual surgery site .... but in my case, the pain lessened & became more of an ache.
I hope you have been assigned a Breast Care Nurse? You will be able to put any queries that you have past them, too.
Re hospital gear - button up tops would be best for showers etc, take your iPod/iPad/chargers etc for entertainment, ear plugs are good to cut the night time noise & eye masks (as on airplanes) to assist your sleep ... Make sure you take the pain meds as prescribed (and don't wait for pain to develop ....) and do any suggested exercises 'gently' & don't over do it .... Oblong shaped pillows may help with supporting your arms at night may help ... to keep them 'chest height' .....
Altho I've not experienced it personally, some members who've had Double Mastectomies have said they've been surprised that they've not been in more discomfort than 'expected' ... so I hope that is the same with you xx
Take care & all the best with your ongoing appts xx
