26 years old with low grade t.c.c.

Posted by: Alyssa in TCClow grade on Print PDF

Here is my story.  I first saw blood in my urine when I was 20.  I was treated for a UTI and the bleeding stopped.  I continued to get re-occurent bladder infections for the following five years.  I am not sure if I ever had infections now or not.  In April of '06 I had an ultrasound to measure the development of my baby who was measuring small.  I had to drink a lot of water to fill my bladder.  The ultrasound was extremely painful.  I went home and peed what looked like cranberry juice.  At all of my following prenatal and post partum visits I had microscopic hematuria which was never even mentioned to me until I asked.  I pushed my g.p. for a referral to the urologist and she hesitated and insisted I had post partum depression.  She ordered an IVP.  The results came back normal just a little dialation of the right ureter tube due to my pregnancy.  She insisted I didn't need to go to the urologist but since she had already referred me I went anyway.  Two weeks later I sat in the urologist's office with my three week old son.  The uro pronounced as he came in that he had personally reviewed my IVP films and I had a lesion in my bladder.  He asked me to go into the cysto room.  He performed the exam and told me that I had bladder cancer and that it appeared to be low grade and superficial. He then asked me if I smoked, if my parents smoked, or if I ever was around smoke.  I answered no and he shook his head in disbelief. The following week I had a TUR and it turned out to be low grade (2of4) ta non-invasive transitional cell carcinoma.  No other treatment was indicated other than cystos every three months for the next five years.  Two urologists have told me that they do not expect to see anymore tumors.  Every time I go to the doctor now They come in asked how old I am and shake their heads in disbelief.  I had my first csyto three days ago and there was no evidence of desease ( thank God)!  Since my diagnosis I have been plagued with worry. Every ache and pain has me agonizing about metastasis. I want to see my children grow up!  I am hoping now that I have had a clear cysto my mind will rest easier.

Thanks for reading my story,
Alyssa


My bladder was clear at the 3 and 6 month check ups!  I am finally starting to feel o.k. !
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Crilly
August 11, 2006

Do me a big favor.  Make an appointment with your G.P. and when you see her, slap her hard across the face.  Short of that, explain to her that she's lucky you aren't suing.  Short of that, educate her that persistent blood in the urine should ALWAYS be followed up with a cystoscope to rule out bladder cancer.  Regardless, fire her.

The uros who are telling you that you'll probably never have another bladder tumor should also be slapped.  Hard.  Considering the recurrence rate of around 70%, it's ignorant, even negligent, to suggest that your troubles are over, and does a tremendous disservice to patients.  Hiding your head in the sand, with your doctors' full support, is not the way to deal with this disease.

On the bright side, most people with low-grade, superficial BLCA will not progress to muscle-invasive disease.  Recurrences, when they show up, also tend to be low-grade and superficial.  However, there is a risk for progression, so be strict about your followup exams.

If you do have a recurrence, and either the stage or grade worsen, then consider a more aggressive treatment approach.  For now, probably the most important thing you can do is to find a new urologist who has a great deal of experience with bladder cancer.  If you continue to be seen by incompetent practitioners, your risk escalates dramatically!


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