Shock from my cysto (and a matter of trust)

Hi Rosemary,
Thanks for opening a new topic for me. I appreciate it.
The last urologist is not the one that removed the 1st tumor. Because I changed my health insurance plan I was referred to another urologist. Then I moved to another state and I had to find another urologist.
I agree with you that we have to stay on top of this disease and do whatever is necessary to save our lives. Having said that, No one likes to be taken hostage by medical professionals recommending unnecessary tests and visits for their financial gain. Please don't take me wrong. There are so many honest and good medical professionals out there but there are bad apples everywhere that we must watch for them.
I was told about the 5 years prognosis protocol by two urologists. May be it was because I had a superficial non-invasive cancer. Also, I have to mention that Cysto, like most medical procedures, can have its own side effects. Pushing a tube in the opposite direction is not something that our body can tolerate with no side effect if it occurs too often. I am under the impression that after 5 years of surveillance with Cysto we have to continue with surveillance every 3-6 months by urine, blood, etc tests. If these test results indicate that the cancer might be back we should confirm it one way or another with Cysto. The same way that my family doctor recommended Cysto to make sure that the microscopic blood in my urine is not cause by cancer. After all I am not a doctor as well.
Sorry for a long response.
Thanks and have a good day.
Regards,
Ben.

Ben,

I hope you don't mind, but, I separated out this topic from Landon's thread. I am hoping to separate your individual issues of Bladder Cancer from his and give your posts the proper attention.

Please keep us posted as to how things are going.

Best regards,
Rosemary

Ben,

I had to google this issue just to make sure that I understood it correctly.
Here is the standard for surveillance for bladder cancer. We are unfortunately never "off the hook."

Bladder cancer surveillance standards arose based primarily on expert opinion rather than as an evidence-based standard. The American Urological Association recommends surveillance every 3-6 months for 3 years and at least yearly thereafter. The US National Comprehensive Cancer Network has made similar recommendations

Although most relapses occur within the first 5 years, late recurrence can occur at any time; therefore, lifetime surveillance is considered the standard.

www.emedicine.com/med/topic3727.htm

Ben,

Okay. I am not a doctor, but, I have never heard of this protocol before. The idea has taken me aback.

I don't understand your Doctor's non-disclosure to you either. You are right that if you can't trust your doctor, it is time to find another one.

Is this the same doctor that initially diagnosed you???

Best regards,
Rosemary

Hi Rosemary,
Thanks for your response.
I am not sure if you have missed anything in my story or not. I was told by my the urologist who removed the tumor 6 years ago that if there is no occurrence of cancer in five years I will be off the hook and I will not need anymore Cystos. That might apply to any growth in the bladder as well. If no more growths in 5 years no more Cystos. After all what do I know? My point is that if the diagnosis is leged then I will comply with the prognosis. My problem is that I am not sure if the urologist is telling me the truth. First he told me there is uneven curve in my bladder then after the biopsy he told me and he has cleaned everything during biopsy. To me it looks like he is changing his story and something is fishy. I could not trust him anymore. I got a second opinion and I am going for the third opinion now. This is a serious matter and I can not take it easy till I get to the bottom of one way or another.
Thanks and have a great weekend.
regards,
Ben.

Ben,

It is my understanding from all of the Urologists that I have seen (3) that any type of growth in the bladder requires lifetime surveillance.

Am I missing something in your story??

Your friend,
Rosemary