Bladder Cancer: High grade

Posted by barneythe2nd @barneythe2nd, Apr 21, 2018

I have been diagnosed with high grade bladder cancer, with recommended bladder removal. I would like to know whether the odds of survival are high enough without such drastic surgery, which has been defined as quite risky.

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amu45sin | @amu45sin | May 28 9:00am

In reply to @amu45sin "Had burning, but notosinful urination. Best to your husband!" + (show)

No painful urination. Amu45sin

amu45sin | @amu45sin | May 28 9:00am

In reply to @jimg56 "Thank you for your reply. I have a feeling my husband won’t be able to hold..." + (show)

Had burning, but notosinful urination. Best to your husband!

jimg56 | @jimg56 | May 27 5:48pm

Thank you for your reply. I have a feeling my husband won’t be able to hold it for more than an hour either.
Did you have any burning and painful urination.?

amu45sin | @amu45sin | May 27 2:23pm

In reply to @jimg56 "So after the may 12th Consult the dr now wants to use 6 weeks of bcg..." + (show)

amu45sin here.
Had 6 BCG treatments after removal of a papillary tumor.
No complications from the BCG, other than that I could only hold it in for about an hour, and not the full 2 hours. Maybe that is why a sesille flat tumor has now appeared in the same area as the papillary tumor.
Cleanup after the treatment at home was easier than I thought.

Colleen Young, Connect Director | @colleenyoung | May 26 8:47pm

In reply to @jimg56 "So after the may 12th Consult the dr now wants to use 6 weeks of bcg..." + (show)

@jimg56, I'm sure the hospital will give you and your husband instructions on how to be safe and keep others safe while on Bacillus Calmette-Guérin (BCG) treatment. Because BCG contains live (but weakened) bacteria, precautions are necessary to prevent it from being passed to others.
- Sit when urinating
- Wash hands thoroughly after urination
- Avoid sexual contact for 24 hours
- While you are being treated with BCG, and for 6 to 12 weeks after you stop treatment with it, avoid contact with people who have tuberculosis.

Your team will also review any medications your husband is taking to make sure there are no medication interactions.

When will he start treatment?

jaxfl | @jaxfl | May 13 5:09pm

It is perfectly safe. There is a risk of side effects. Usually mild. Sometimes severe. But the alternative of not treating is worse. An alternative could be DOCE/GEM localized chemotherapy or brand new Cretostimogene. The hypothetical risk to others is that they could be attract TB through BCG. BCG is basically the TB virus.
https://www.ncbi.nlm.nih.gov/books/NBK562300/#:~:text=Miliary%20TB%20occurs%20when%20the,tubercular%20lesions%20in%20affected%20organs.
https://cgoncology.com/science
Unfortunately, in medicine, there is alway risk. 1% of RC surgeries end up in fatality. A similar percentage of people that get nivolumab pass. Such is life.

jimg56 | @jimg56 | May 13 5:43am

So after the may 12th
Consult the dr now wants to use 6 weeks of bcg treatments on my husband. There was a tumor at the neck of the bladder that he removed.
My husband is wondering if bcg is so dangerous to other people that he has to be careful cleaning up after urination for 6 hours then how can it be safe for him? Any answers sincerely appreciated. I hope this makes sense.

Colleen Young, Connect Director | @colleenyoung | Jul 27, 2024

In reply to @mgb007 "Hi Roger, did you have the neo bladder constructed internally or do you have the attached..." + (show)

I'm tagging @rogerferr so that he sees your question.

@mgb007, are you considering a neo bladder?

mgb007 | @mgb007 | Jul 20, 2024

In reply to @rogerferr "Hi: I am new to this group, just found it and registered. I too have been..." + (show)

Hi Roger, did you have the neo bladder constructed internally or do you have the attached to you side?

Colleen Young, Connect Director | @colleenyoung | Jun 13, 2023

In reply to @rogerferr "Hi: I am new to this group, just found it and registered. I too have been..." + (show)

Hi @rogerferr, welcome. You mention that you also had your prostate removed. Was prostate cancer also discovered?

I'm glad to hear that there were no complications physically speaking. But it sounds like adjusting to the new normal had its challenges. What did helps you find balance in life now?