Clear Cysto and Chat with Urologist

13 years 10 months ago #6557 by Rosemary
Clear Cysto and Chat with Urologist was created by Rosemary
My doctor is very pleased that I had a clear cysto today. "It looks good. This is good news."

My doctor is very good about allowing me to chat and in helping me to feel free about asking questions. He looks me in the eyes.

He wants to do an upper scan in the next 3 months to make sure the kidneys are clear...

The question came up of the Mitomycin issue and evidently my Uro clinic stopped doing Mitomycin because of a reported death in the Urological World and there is a major law suit going on about it, and it hasn't been determined yet what exactly caused it. "Law Suit" is the operative word here, I think...

I told him I felt that there was a definite correlation between the bladder and the lungs, and he really listened to my thoughts. He said I felt that way because of the correlation of smoking and I said, yes, but, doesn't bladder cancer usually metasticize to the lungs first? And he said that it can go other places, but, yes, they usually take a good look at the lungs.

(Just free associating with my good doctor. )

He is now diagnosing me as a patient with a "history of bladder cancer" instead of a "patient with bladder cancer."

Thanks everyone for your support.

Your always friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

Please Log in or Create an account to join the conversation.

13 years 10 months ago #6558 by Mystic
Replied by Mystic on topic Clear Cysto and Chat with Urologist
ROSEMARY,

I AM SO GLAD TO HEAR OF YOUR GOOD NEWS! CONGRATULATIONS!!

IF I MAY ASK, HOW LONG DID YOU HAVE BLADDER PROBLEMS AND HOW MANY TREATMENTS OF BCG????

MYSTIC (LINDA)

Linda

Please Log in or Create an account to join the conversation.

13 years 10 months ago #6559 by Alice L.
Replied by Alice L. on topic Clear Cysto and Chat with Urologist
Nice Work, Rosemary! I really am sooooo Happy and so Pleased of your results.

I can't wait to hear the same words hopefully some day soon myself.

Thank you so much for letting us all know.

One of your followers :)

Alice

Please Log in or Create an account to join the conversation.

13 years 10 months ago #6561 by Rosemary
Replied by Rosemary on topic Clear Cysto and Chat with Urologist
Thanks to you both for your support and encouragement.

Linda,

I've had bleeding for years and years that I always assumed was vaginal. To this day, I do not know if the blood that appeared in my toilet for years on urination was a huge signal of the large tumor that was growing in my bladder. I was diagnosed January 2006, had two TURB's with Mitomycin, and then 12 subsequent BCG treatments. I've had no recurrances.

I did ask my doctor today if he was comfortable with discontinuing the BCG's and he said that he was comfortable with that.

Thanks again to you all,
Your BC friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

Please Log in or Create an account to join the conversation.

13 years 9 months ago #6582 by klau1973
Replied by klau1973 on topic Clear Cysto and Chat with Urologist
Rosemary,

What wonderful news!!! I was praying for you today! Hope my mom gets such wonderful news tomorrow -- I will let you know.

Kim

Please Log in or Create an account to join the conversation.

13 years 9 months ago #6584 by wendy
Replied by wendy on topic Clear Cysto and Chat with Urologist
Dear Rosemary,

Please accept my belated congratulations for your clean follow up! Yes.

About Mitomycin causing a death, I don't know what happened in the USA (if that is where it happened) but in Holland a person died after a post-TUR shot of mito because there was an inadvertent perforation in the bladder that was undetected, and the drug went into the bloodstread and was too toxic. The use of Mito or any drug post-TUR cannot be instilled in case of deep TURs or suspicion of perforation.

I was surprised to read in another post of your that your doctor said to expect bad reactions even to lowered doses of BCG, because of your past experiences with it.

I thought that was the rationale for lowering the dose-to lessen the side effects, too (but with the same efficacy).

Lamm says that continued side effects are a sign the immune system is in overdrive (maybe) and that no more BCG should be given until all side effects from the previous dose are gone. Side effects don't equal better effectiveness (unfortunately).

Here's hoping you never need another treatment!
Best wishes,
Wendy

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne