[julierene]

Yes, being 5 years out is a huge accomplishment. A long time ago, back in 1991 I gave my blood for research. We had a huge line of cancers in our family, and they wanted to test me after my 5-year old brother developed rhabdomyosarcoma after my mother had just died at 33 from breast cancer. I never heard anything back, I was 15 years old.

When I was having my 3rd child, I was diagnosed with breast cancer at 28. Then 9 months later, my 5 year old daughter was diagnosed with adrenal cancer. They "tested" our genetics again and said we had Li-Fraumeni Syndrome. It really angered me, that I had this horrible suspension that they tested me on that back when I was 15.

I did a whole bunch of research and searching to find that pediatric oncologist of my brother's and found that they had indeed tested my p53 gene, but the whole thing hadn't been mapped out yet. As far as they knew, we had no Li-Fraumeni, or the chances were very low. They had tested Exon 1-9. Ours fell into the 10-12 last section, and it took them over 10 years to realize we were one of those unfortunate families. For years, I dealt with knowing I had unknowingly passed this gene to my other 2 children.

Now my own dx was supposed to be Stage 1/2a and 89% chance of no recurrence. After I begged my oncologist for HER2 test, and it came out positive, he wouldn't give it to me because it wasn't approved for early stage breast cancer. My ex had drug me out to podunk Illinois, and I had begged for him to take me back to the city so we could deal with all of this crap. I wanted Herceptin. But I couldn't get him to move back, and I felt like I needed my husband so badly. So now, my cancer is spreading everywhere, my ex cheated on me 5 years before I ever got cancer... now he is married to someone else. I feel so cheated and sh.t on that I can't even hardly manage my daily life.