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Rock and a hard place.

10 years 6 months ago #24460 by mmc
Britt,

Wow! Not a good story.
The treatment all depends on what they found. There are stages and grades. If it was superficial (not into the muscle wall), there is typically a follow up of BCG done weekly for 6 weeks, and then maintenance doses after that at the 3 mo, 6 mo, 18 mo, etc.

The problem is that the BCG is instilled through a catheter into your bladder. If you have such a problem with prostate constriction, it may be worth seeing if the can do something surgically to releive that so that they can do the instillations.

You certainly do need follow up treatment. BCG can GREATLY reduce the chance of recurrence so it's important to check out.

If you can't get through the VA, then certainly get it somewhere.

Best of luck,
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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10 years 6 months ago #24458 by britt
Over a year ago I had 2 instances where I passed blooded clots followed by blood tinted urine that lasted a day or so. Within 2 months I saw a VA urologist. They had me in the lab for a c-scope but had to stop do to pain from restriction at the prostate. I was scheduled for another procedure done under a general but a week prior they cancelled as they lost the staff urologist.. They finally sent me to a private dr. A Dr Jacobs out of Greenville Oh. He scheduled the procedure but the VA wasnt doing any follow thru for me. I was demanding clearance first do to my cardiac condition. Severe CHF(Ive had 5 MI's). The day before the procudre I was called into cardio and they down checked me till further tests. After a andosine stres test I was cleared. I went in for the C-scope 13 dec 08(14 months after the clot issue). I woke up in recovery thinking it was time to go home. Instead I find myself hooked up to a catheter and bag. The Dr informed me they found bladder cancer. It was supposedly the mildest form and while malignant he informed me that he was able to remove it all. I was inpatient for only 3 days. The whole time I was in agont. The 2 bottles of saline that were irragating me caused spasms that had me screaming. I had 2 followup visits with Dr Jacobs within a 2 week period. The last visit he told me he would be continuing my care. I needed the scope done every 3 months from now on. About 2 week later i couldnt find him. The office he had at Kettering Hospital was vacant and there was no answer at his main clinic. It took me several weeks to track him down. He suddenly closed his practice and joined a group 120 miles north of me. When I did talk to him he informed me that he couldnt treat me any longer even if I could get up to him. The VA picked up a staff urologist and pulled in all patient that were outsourced. When I got ahold of the VA clinic they had no clue of who I am. All they had was the referal to this Dr Jacobs. After going thru my PC dr and the advocate they finally got my records an d scheduled me to come in for a consult. I find out that they had me scheduled for a c-scope in the lab again to see what was going on with me! I had to inform them that I need to have the scope done under a general every 3 months at least for the time being.
Now I find out that this new VA dr is leaving in June of this year!.
I really dont understand my condition. The dr I saw seemed either vague or I just didnt understand him about the nature of the cancer. When I saw the photos it looked like the wall of the bladder was sunburned and the after pics showed pink skin.
Are there a lot of different types of this cancer? Can somebody tell me more about it from my vague description. What really worries me is how serious is this? My pharmacists father went thru a similar ordeal. He told me it was vital that I have continuaty of care with the same dr.
I finally have a consult with the VA uro. on monday. Im not really sure what to ask him. My wife want to demand that they send me fee based to a private uro.
Help.
Thanks
britt
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