Dear PJ

I appreciate your message. I was misled about my cancer from the beginning. I found my lump in June 1997. It did not show up on mammogram and I was told not to worry about it. I did forget about it as my husband had a fatal car accident 3 weeks later. At the end of September 1998 my family doctor (I had to get one due to my depression) found the lump. My surgeon was angry that nobody biopsied the lump. I was Stage II in-situ and invasive estrogen positive lobular cancer (they found cancer on the chest wall which pushed me up). At the time I was in Tennesse and had a 5 year old child to raise, my family was in Michigan and I was trying to make it alone. The one who led me astray was the plastic surgeon. I was a smoker and he told me I had the weekend to quit. He did a sloppy job-the right breast was not fully closed, I could see raw tissue and that breast was much larger than the other. I had lost 30 pounds and did not have a lot of body fat. It did not heal and he had me coming to his office every other day-even on Sunday's from October 21 until I decided to leave it all and get my butt home to my family, December 20, 1998. I had set up an appointment with a doctor at the U of M in Ann Arbor (he was wonderful). By the time he saw me on Jan 7 my right breast and abdomen had broken open and turned black. I was scheduled for surgery on the 9th and healed and started AC chemo. My onocologist said I would only need 4 rounds of chemo-in TN they wanted to do 8 rounds-I'm glad I moved. My plastic surgeon at the U of M said I wasn't a good candidate for the bilateral tram-that weekend wasn't enough. Like I said I had problems-the mesh ripped at work, I ended up removing the implants because I kept getting suspicious calcifications--it was enough to worry about recurrence.

I've been through 5 years of tamoxifen and am on my 5th of aromasin. Unfortunately I didn't know until last year the aromasin takes calcium from the bones (I had fallen asleep on the sofa one night and when I stood up my foot broke) and I need a hip replacement (severe arthritis) and a spacer needs to be placed in my lower back now(degenerative disc disease, spondylosis of L4-5, and severe spinal stenosis). Yes, I have been through physical therapy and know the exercises. Also Cytoxan can cause bladder cancer and I was diagnosed with that last June. I have had 6 BCG treatments and have 6 more to do over the next 2 years and cystoscopies every 3 months for 2 years. And this will be another lifelong problem. I really thought I had it in the bag then wham! I got shot down again. I do worry that nobody checks me out that well since I don't see my plastic surgeon any more. I worry I could get cancer on the chest wall again. My problem is that I cannot find a good doctor. Between the back, hip and stomach I can't lift patients anymore and so much for the job I've done since 1989(dialysis).

My main concern is that I still have that kid who will be 16 in April. Because of a recent discussion we've had, it would crush her if I died-I can accept it but we are really tight and she loves me as I do her. It's just been us-I have never even dated since her dad passed. This past year was rough on me and I look like I've aged 10 years and feel it too. I am uncomfortable in my body in every way posible, but I'm hanging in for her. We have great plans for her and I need to know she'll be alright. My other concern is that my insurance is BCBS through Ford Motor Co. It's not much so I can't do everything I need to do including repairing the mess from the tram, I cannot afford it all. I even went to apply for disability. Now that was a good doctor. She found everything including things nobody else has ever looked at. She saw the belly (it swells up and gets hard as a rock, which makes me very uncomfortable-plus I can feel the staples pick my insides quite often-the mesh has disappeared, it's floating somewhere in there), she looked at my hands which are showing big signs of more arthritis and even what I thought was carpal tunnel, she said it was arthritis. Unfortunately she doesn't take patients. By the way I haven't seen my onocologist for 3 years, just her nurse.