Julie, I will be speaking with the urologist and a patient advocate on Tuesday. My last 2 surgeries were in the Tampa VA hospital where there is a urology residency program. They have seen many cancers but my symptoms/calcifications/pain/bleeding are not something they are familiar with.
Michael, I think since this is one of those situations where it is mandatory for the VA to refer you to a specialist. Their not knowing is the best indicator that you need to be seen where the specialist sees hundreds of bladder cancer patients a year instead of a few. Ask to speak to a patient advocate about what is possible. Julie
Julie. Thanks for your comments. Since everyone is saying "We don't know" I do not know if they would be willing to refer me outside the VA. It would make it more simple if it were a diagnosis or test they could not provide.
Michael, If the VA does not have the ability to treat your situation they could make arrangements for a consult with Dr. Schoenberg. My sister is treated by the VA and when she needed surgery and there was no one of staff at that time that did the surgery she needed they made arrangements for the surgery to be done in a local hospital. Julie
Also, I do have the ability to travel to John Hopkins to see Dr. Schoenberg, I just do not know if I could afford hospital treatment outside of the V.A. I'm really seeking answers and I am frustrated my situation seems to be getting worse, but none of the doctors in the V.A. seem to know how to fix me.
Regarding the calcifications, they are not free floating in my bladder, they are embedded in the wall (which is unusual). The last two surgeries I had they removed the calcifications from my bladder wall. Not to be graphic, but, the majority of the time the inside of my penis feels hard. After I urinate it relives this "hardness" but only for a very short period of time. The blood in my urine with clots of blood continues even though surgery was 4 weeks ago. I also have pain that radiates from my bladder to what I can only describe as my "ureters"...like a nerve pain...even radiates down to my thigh..an achy pain.
I have been told in the past that it could possibly be a rare mitomycin reaction but no one knows for sure. I am going to the urologist on Tues and will be asking about the parasite and TB.
I would like to contact Dr. Schoenberg but I am insured only through the VA at this time. I am unable to work/obtain private insurance. Wendy, has Dr. Schoenberg seen any treatments that might work for the mitomicin reaction?
Thanks again for all your answers. I look forward to hearing from you....I do not have internet access where I live right now but will be checking back in soon.