I am sorry the results did not go as planned, unfortunately lobular is a tricky one to detect. Definitely get the oncotype test - yes it is a lot of money, but it will give you a lot more specific information. I find it hard to believe that this test is not covered as it can ultimately save a lot of money if chemo is not required - that’s an argument for another day. I had lobular and the MRI turned out to be accurate - no nodes involved; tumour size same as pathology etc. I had already decided that I wanted a bilateral mastectomy as I had dense breasts and I knew that my ILC was not seen in a mammogram 10 months prior to my diagnosis - it was over 4cm in area. I did not have radiation, but did neoadjuvant chemo. I am now 2 years since diagnosis.
I commenced immediate recon - expanders - but I can honestly say my recovery was excellent. I did not wear a bra after the surgery. I just had 2 strips of waterproof dressing which meant I could shower etc. I used my hair dryer to dry the dressing after my showers. Button up shirts/dresses that can be pulled up are excellent at the start. The side where I had the node biopsy was definitely more sensitive and a bit more restricted, but that improved pretty quickly. When I left hospital I had some strong pain relief if I needed it, but mostly paracetamol did the job.
My breast care nurse provided 2 cushions - crescent shaped and 1 for under each arm - which were made by a local Zonta group. They were really good at the start, but I did not use them for long. I had a drain in each side which were removed on day 6/7 before I left hospital. The time of removal depends on how much is draining off - it needs to be low. It will also depend on your surgeons - my plastic surgeon and surgeon would not let me come home with drains so I was in hospital for the week. A bag for each drain is great - long handles that you can sling over your shoulders so that you can get up and moving and your drains are safely tucked away.
The physio will visit and give you some exercises to do - please make sure you do them as these will help with your ongoing recovery. You can also google lots of YouTube clips on exercises as you recover.
You may find your breast area is very numb - mine still is and it will depend on how comfortable it is for you to use a breast prostheses. Ask the breast care nurse about this as you will most likely be given a bra to wear if you choose to.
Take care.
