Hi @Julez1958,
Sorry you are here too. I had ILC and my main tumour was 5.5cm too. Did you have chemo?
I had a single skin saving mastectomy as i wasnt sure about reconstruction. My surgeon didnt do reconstructions and would refer me later. Ive had chemo (5 months!) and about to start radiotherapy. Chemo was recommended for me due to my age even though no lymph node involvement. Its been explained to me that chemo is to reduce risk of any stray cancer cells getting around the body. Radiotherapy reduces risk of local recurrence where you had cancer.
Personally im not keen on surgery and im not unless advised going to take off my second breast (nor am i going to have reconstruction). I think its up to you how you view the risk to yourself, if your reconstruction needs to alter your good breast for cosmetic reasons to even them up anyway , and how likely you are to worry about a recurrence.
There is not as much research into ILC and i know others may view it as a slightly more unpredictable cancer. I have no cancer at all in my family and ive been told by my surgeon that the braca gene is not applicable to my cancer. I am following best advice available to me and i refuse to live in fear of what might be. I look upon my body with kindness for the trials it has been through. Im working on lifestyle changes.
Not sure that this really helps you but it is your body and you get to choose what is best for you.
Best of luck.
M
