Susan – Delayed Diagnosis, Part I

Susan – delayed diagnosis
A volunteer at my church helped me find WebCafe and its forum. My bladder cancer has spread to my liver and lungs, maybe a bone. i was supposed to have a radical cystectomy this month (Dec. '07), but we cancelled it after the MRIi report. Now, I'm getting chemotherapy (taxol and genzar). MVAC didn't work for me. Radiation did shrink my primary tumor.

I am told my case is "difficult" because of the late stage of discovery/tur/diagnosis (Stage 3, fat invasive) the sarcomatoid variant, and now the spreading. I know it is difficult — I just want to be seen as important enough to try maximally to help and credible enough to believe or at least to follow up with tests based on my reports.

i feel well (most days) and am working as a college teacher. I am trying to finish up some writing projects and stay warmly engaged with loved ones. As a newbie on this forum, I was asked about my “first symptom” and this history evolved.

I am a 60 year old female college professor living in coastal Mississippi. I do not know what my first symptom really was because I have had bladder issues all my life. I have always had to "hold it" for extended periods on car trips because drivers just wouldn't seem to stop to let me "go." For at least a couple decades I have been reporting burning and very scanty bleeding, thinking I had frequent infections. Sometimes it was an infection, sometimes not. I was puzzled when it wasn't and discovered over-the-counter medicines than handled the symptoms in a day or two.

I felt some "pressure" for several years, but no one ever took the report seriously. I felt this, for example, when I tried to use the elliptical trainer at the gym.

After living in the Northeast all my adult life, I moved to Mississippi with my husband in 2004. We were both retired teachers at that point. I went to work again full time immediately as a professor in Mississippi. We now live on the Mississippi Gulf Coast. Starting in 2004, I had the misfortune to change primary care physicians several times in just a couple years. My doctors kept moving away or retiring. To each, I reported bladder burning, light, pink or red bleeding from urethra (not elsewhere) after intercourse….That dated back to 2004. In 2005, my city was hit by hurricane Katrina. We lost our home and its contents and lived in an rv (one we bought) for months. I had seen 2 different doctors in 2004, I also saw 2 in 2005. The medical infrastructure was decimated; many doctors left.

What I really do not understand is why, when I reported painful urination with blood to at least six primary care physicians and nurse practitioners starting in the 1980s, all but one seemed to act on the hypothesis that is there was no infection (even if there was blood), I was imagining it or we could "wait." The nurse practitioner who was trying to figure out what was going on (I seem to remember the term "inflammation" and reporting some pelvic discomfort as well as there being some relatively minor abnormality in a CBC) left practice at the time of hurricane Katrina and I got back on the cycle of "waiting" with the new doctor (who soon retired).The third dr. did mention cancer but talked about waiting for several cycles of antibiotics before sending me to a urologist. That didn't happen because I got an emergency referral to a urologist when I was hospitalized.

Continued as: Susan – Delayed Diagnosis, Part II

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