Anyone had an oncoplastic lift and then a double mastectomy?

Thanks BarredOwl -- I'll try and get this article and read it this weekend. Yes, I have lost confidence in my team. I feel like I need a doc -- MO/BS/RO -- who really understands the nature of lobular cancer and can help me make informed decisions based on that. Not feeling like I have anyone on my team who has factored that into the planning at all.

Nash -- I'm not sure if I'm seeing using the A1 as a neoadjuvant therapy (hard to think of anything as neo-advuvant when you've already had five months of chemo and lumpectomy with breast lift) but perhaps I'm seeing it as a way to reduce the systemic threat for a while and let my body and particularly my breasts heal. All along the docs have said that the best "tool" for preventing a systemic threat of recurrence are the hormone blockers, since they are "uber-effective" for lobular and for all highly positive estrogen tumors. I'm not sure why they've sent me down the road on all these other measures when they've said from the beginning -- and continue to say -- that the hormone therapy is the best bet. Ultimately I know I'll do a BMX but frankly, with bruises still all over from last week's procedure and steri-strips still hanging from my breasts, I'd love to not jump back into surgery right away.

As for the radiation, I'm getting mixed signals from the docs. Some say its crazy to do radiation when you know you are going to go back and have a BMX and some say if you have a BMX you might not need radiation at all. Before surgery they thought the cancer was up against my chest wall and that made radiation a necessity, but that was another surprise from the surgery - turns out it wasn't so close after all but it did go deeper toward my breastbone and collarbone than was picked up on the MRIs. (Which adds to my leaning now for a BMX). I'm learning now that's the fun of lobular -- the images are very deceiving.

Hard to say if it shrank at all. The original MRI following biopsy showed a mass of approximately 2.1 cm but some additional cancerous material that totaled about 4 cm, so some of that may have been ductal carcinoma and may have been suitably attacked by the chemo. At 2.3 cm, the tumor turned out to be larger than they thought at first MRI and way larger than the subsequent MRIs led them to believe. At my last MRI and meeting prior to surgery, the BS said the tumor was gone and that all that likely remained were some dead cancer cells. Boy was he wrong.

The docs are suggesting that I probably did start out with both IDC and ILC (which may have contributed to some of the misinterpretation, though certainly doesn't excuse it).

On some of these ILC threads, it looks like some women were diagnosed with ILC from the outset and skipped chemo -- even with stage 2 cancers -- and treatment was really surgery and A1 inhibiters.

The big question is: if ILC isn't really detected in imaging, how do you reliably find a recurrence at an early stage?

So sorry to hear about the radiation damage on your lung. It seems that doctors used to use extensive surgery for breast cancer and now have gone 180 degrees in the other direction and push extensive chemicals and radiation instead. I guess every case is different but it seems that both ways leave open the chance for a recurrence. Good that your recurrence was caught early and lucky that it showed up on an MRI. I get the feeling that a lot of lobulars are completely overlooked by MRIs. I've heard that there are blood tests that are either newly out or still in trial that have been successful in diagnosing ILC early. Something I need to explore...

Another frequent contributor to this website mentioned to me that the University of Pittsburgh is doing a study solely on lobular cancers -- trying to determine if certain hormone blockers are better than others for ILC specifically. Unfortunately the study is ongoing so no news yet. Hopefully we'll both keep this under control long enough to benefit from the research. We both were diagnosed pre-menopausally -- me at age 49, six long months ago...

If you don't mind me asking, what are the worst side effects? I'm going to be in that boat pretty soon. Are the side-effects worse on A1s than on tamoxifen or are they different?