[madubois63]

Gerri - What a good question!! I think this will give a lot of people information to consider in making decisions on their treatment. Hmmm...Let's see. First off, I wish I did not wait 2 months before I saw another doctor that told me the small, warm, scaly patch under my breast was "nothing." It was inflammatory breast cancer, and I was stage IV. I should have pushed for more aggressive testing at the time. I just wasn't thinking that I would have breast cancer at 36 (or probably ever). Second and very importantly, besides blood work every six months after achieving remission, I TOTALLY wish I had at least a yearly PET or CAT scan. I was totally floored when a simple cough turned out to be a reoccurance!! I KNOW that diagnostic testing would have caught the bc before it was in both my liver and the lungs. Maybe it wouldn't have been so aggressive??? Third - I would have stopped chemo (the second time) sooner than I did. For me, chemo induced leukemia (and don't think it can't happen to you - it happens more than you think). I desperately want a test that tells you how much is too much treatment. If there is a test telling you what chemo's will work, why isn't there a test that tells you HOW MUCH chemo to use. I've asked this question of several scientists. They just looked at me funny and didn't have an answer for me. Hopefully I've made someone think...

I know there are more things I would do differently, but there are some things I did right. I applied for Social Security Disability pretty much immediately. Now, not all people with breast cancer are approved immediately, but if you search the SSD site, it will tell you the qualifications. Stage III, IV and Inflammatory are pretty much qualified immediately. I did a lot of research for financial assistance (my bone marrow transplant alone was over half a million). Apply for everything!! The worst thing that can happen is that you get denied, but you may just be surprised at all the assistance that is available. Don't deny yourself pain or nausea medication and if your overwhelmed by this disease or the change in hormonal levels ask for anti-depression medication. After starting Tamoxafin, I became suicidal. I couldn't understand how it was that I worked so hard to beat this disease, and then I was having thoughts of killing myself. Find a support group! I thought I didn't need to sit around and dwell on cancer with a bunch of stangers, but I've learned so much and made some of the best friends a person could ever have! It really helps to have friends that UNDERSTAND.

I'm sure there is more, but I hope this helps someone. Thanks again for starting the thread....