I am not sure but let me give my vote for Quality of life vs Tamoxifen for ten years. Tamoxifen lost. I quit taking in less than 4 months. No guarantee for all the SE's? Not worth it. I am MUCH happier since I stopped taking Tamoxifen :)

I tried all 3 Aromatose Inhibitors and they made me feel awful. The side effects were terrible. The last recommendation was to go on Tamox but I would have to have a DNC every 3-6 months due to having some problems in the uterus in the past. I said no thank you and stopped this past december. I cant believe how much better I feel. I got alot of energy back, I feel more like my old self. ILC is a sneaky cancer according to a surgeon at Johns HOpkins. They are finding that ILC needs to be studied and treated differently than IDC but that is all still in the works. She called it sneaky because it sneaks into your bones, GI tract, brain, lungs and even your skin tissue. Its often missed because of its linear formation.

I have stopped taking it after 8 months, been off it for a month now and am feeling more like myself. Just have everything crossed I am doing the right thing.

Thank you Danielle! I'll be talking to my onc in a couple weeks about the effects !!really don't like the way it makes me feel!!

Initially I tried all 3 AIs (with monthly lupron shots) and because of severe vaginal atrophy (frequent UTIs, vaginal penetration not possible) I moved to Tamoxifen recently to see if things would get better. With the Tamoxifen I have to take Xarelto because I have Leiden Factor V but now 5 months later I'm not sure if the GI issues I'm having are the new meds/treatment side effects or potential metastasis to GI tract. I'm struggling with my Oncologist at Sloan Kettering who always jumps to CT or PET scans -- which can give false negatives because the imaging isn't that sensitive for lobular. Plus I feel I've already had so much radiation. So now I'm on the hunt to find an oncologist who is actively studying lobular and who has a lot of experience understanding how it metastasizes. Has anyone done similar research? Know of anyone?

Re, your question about lobular and Tamoxifen, I haven't read that but I did do the genetic test to see how I metabolize Tamoxifen and I'm apparently an intermediate metabolizer, which isn't ideal. But my onc doesn't believe those studies so I'm frustrated once again. I really feel like breast cancer treatment is still one size fits all even after all the billions of dollars in research etc.