The following is edited from a personal message sent to Gene Beane in response to my first posting. 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 sympton 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 (e.g. my father) just wouldn't 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 every 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, bleeding from uretra (not elsewhere) after intercourse....That dated back to 2004. In 2005, my city, Bay St. Louis MS was hit by hurricane Katrina. We lost our home and its contents and lived in an rv for months. I had seen 2 different drs in 2004, I also saw 2 in 2005. The medical infrastructure was decimated; many doctors left.
In January 2007, the bleeding became continuous. I went to my present primary care doctor and was told that I should take antibiotics and see if it improved. I called back when the big clots started coming but was told to just keep my regular appointment. I didn't get to that appointment because I had to go to the hospital with "frank bleeding." I got a referral to a urologist while hospitalized and had a tur after being transferred to a hosptial repaired enough to do it.
Pathology: Stage 3 high grade tcc with sarcomatoid features. Some tumor remained after tur. The tumor has invaded the fat. There was no clear lymph node involvement.
It took a month to get me an appointment in Boston at Dana Farber Cancer Institute. The Urologist contacted a highly esteemed Mississippi oncologist who contacted DFCI. I thought I was going for a radical cystectomy, but 4 cycles of MVAC first were recommended by the medical oncologist I saw at Dana Farber. After two cycles and unabated tumor growth, we switched to radiatiion + low dose taxol. I was in Boston March-July.
Then I went home to Mississippi to recover from radiation. I consulted with a surgeon in Boston in August who agreed to do a r/c in December. I went home, again, and worked and exercised but had no treatment from August-MidNovember. My pre-surgery mri showed mets(multiple) to liver, lung and maybe a bone in my back. Surgery was cancelled; the medical oncologist at DFCI recommended gemzar + taxol. I asked if I could have it home in MS. She said yes; so did the oncologist in MS who had referred me to dfci in the first place. That's where I stand. You can’t change the past, but I do think I should have seemed a good candidate for a bladder cancer workup before my “frank bleeding” episode and I wonder about a few other aspects of my treatment, too -- I have noticed others being offered more options and I wonder if that is because of the nature of my cancer or the perception of their ability to pay or what. I am sorry this is so lengthy. mssmr
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