@nycoceans Sorry to hear about your diagnosis but it sounds like you have a good follow up and treatment plan. Six years ago I was diagnosed with LCIS and four years ago I was diagnosed with invasive lobular cancer. Here's the good news……with a follow up plan similar to yours I found the invasive Lobular at Stage 1, with no spread to my lymph nodes. I wasn't able to take Tamoxifen due to side effects and I guess I'll never know if taking the meds would have stopped the invasive cancer but I was able to find my cancer before it was much worse, with a lot of diligence on my part and my doctors. The decision you face is a very tough one and I know I worried a great deal about whether to take the drugs and also that I wasn't able to do so. The side effects can be significant for some and it's a tough road deciding what will be best for you. My doctors were helpful in steering me in the direction of lifestyle changes such as diet, losing some extra weight, and supplements in lieu of the meds.
The first drug recommended was the Tamoxifen with LCIS and later when I was post menopausal the AI drugs. I couldn't tolerate any of them….well, my doctors gave up at 3 of 4 of the available drugs…so I have never had the advantage of the meds, but I am four years out now and my last checkup in December shows no sign of the cancer coming back.
True, it's harder to find Lobular and it behaves a little different than Ductal. Whether you take the meds or not, make sure you are diligent about screening and don't hesitate to ask for tests like ultrasounds (which found my lobular) or MRI's. You'll feel better and you'll have a much better chance of catching more LCIS or invasive IF……IF……IF……it comes back. (I hope it doesn't….I hope you're on the statistics that show a one time event).