FOREVER!

Hi, I was diag with ILC june2012. 5 useless mammo's told me I was fine. An MRI said it was less than 5 cm. After the u mx I was told that it was 11 x 9cm. I did CMF chemo for 5 months, near the end of that time my onco told me chemo was 90 to 95% useless for ILC. That was quite an unpleasant revelation to get when the damage was already done. I hope the oncologist was wrong about that. Then I did rads for 5 wks. I did 9 months of tamox. Was making me have horrible mood swings, crying or rages. Never knew which end was up.

I have always been more interested in following the natural path, so that is what I do now. I feel I have had enough of the bc industries misery making nonsense. I know that sounds scary to many of the people who post on the boards. I used to believe in their stuff, "Get your mammograms for early detection ". Well, that obviously didn't work out too well for me, or other ILCers. They, the bc industry , doesn't seem too interested in finding good, accurate diagnostic tools. Reading about the merry go round that women have trying to trace illusive symptomS is just plain scary and disillusioning..

I am trying to reconstruct, had a Oncology trained Naturopath helping me and I desperately hope to see my 10 and 12 y.o. DD's grow up. My next surgery is April 9th, getting a TE then later an exchange surgery for a silicone implant. I don't know I am doing the right or wrong thing, but I feel happier, at least more often. Quality of my life is important to me.

Just presenting an alternative viewpoint. Goodluck and blessings to all here in finding their way.

Macb04, yikes! My tumor was big too, but I think you have me beat

I have truly no idea where you onc came up with that statement. I have read several, recent studies that conclude nothing of the sort.

The only difference between ILC and IDC in regard to chemo is that IDC is more likely to have a "pathologically complete response" [pCR] to neo-adjuvant chemo (zero cancer left by surgery time). However, even in IDC, this only happens 15-20% of the time. In ILC it is 5-10% of the time (the reverse of the percentage your onc gave you, so possibly what he was trying to refer to). The thing is that even without a pCR, the chemo still confers significant survival advantage, especially when you have stage 3 cancer.

I had chemo before surgery and it reduced my cancer by approx. 30%. My Onc was pleased and told me it was a great response. However my Ki was high and er/pr 100%- not sure how much that factors in. I believe having chemo first reduces the cancer burden for removal and slows the incidence of seeding.