Forum

× Welcome click the New Topic button to post

Newly diagnosed, had a TURB two weeks ago.

4 years 7 months ago #48229 by sara.anne
I am sorry if you misunderstood me. This is what he said about the path report

"He also told me it was high grade superficial tumor / polyp and that the abnormal cell count was low. He also told me the pathology tends to "round up" to high grade as a point of caution, suggesting that mine was barely 'high grade.'

Under these conditions, I believe that what I wrote is appropriate.

As for the BCG doses, they can be reduced, according to Dr. Donald Lamm..an expert in BCG treatment...to as low as 10% of the initial dose. However, this is usually done when the series is farther along and side effects become extremely challenging. Mine was reduced to 1/3 the original dose when I started showing signs of BCG-cystitis. As long as you can live with the treatments, it probably isn't a good idea to reduce them too soon.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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

4 years 7 months ago #48228 by fighterm
Sara Anne, he said high grade. The high grade cells divide pretty quickly even though there are not many of them now. I am trying to remember what you said about lower concentrations of BCG. Could you please explain that again. I am planning to ask for a light BCG at my next appt.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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

4 years 7 months ago #48227 by sara.anne
Welcome to our "club" which you didn't want to join!!

The effect you are feeling after the TURB are perfectly normal ....after all, he did cut little pieces out of your bladder lining. And the fact that they are getting better is typical also.

Your doctor seems to be "right on" as far as his recommendations. You will probably be having cystoscopy exams every three months for about the next two years, then every six months until five years have passed, and then every year forever.

Yes, bladder cancer does tend to come back. And if it does return several times the urologist would probably recommend BCG. However, at the present time, with more of the characteristics of the tumor being relatively low grade, BCG would not normally be used now. It tends not to be as effective with lower grade, slowly dividing tumors. Better to save it for the chance that you might need it later. After all, you have a 50% chance it will never come back!!

Just be sure to keep up with the cystoscopy schedule!

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Marble68

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

4 years 7 months ago #48224 by Marble68
Hi - I was recently diagnosed with bladder cancer.

I had a TURB two weeks ago (Jan 21st) and had a catheter for five days. I think the code for my cancer is TaN0M0 - Stage 0a. That's noninvasive papillary urothelial carcinoma.

Upon removal, My Dr. and I discussed the pathology. First, he told me what they found in me was not life threatening. He also told me it was high grade superficial tumor / polyp and that the abnormal cell count was low. He also told me the pathology tends to "round up" to high grade as a point of caution, suggesting that mine was barely 'high grade.'

He told me because of my age and based on his experience, I had a 50/50 chance of recurrence; and his recommendation was to get rechecked in 90 days.

I asked him about BCG and he told me he'd do it if I wanted it, but he thought in my case the possible side effects didn't justify doing it; in my case.

So here I am, two weeks after my TURB. I'm hydrating more than I ever have in my life and I'm having to pee every 30 minutes. Sometimes it burns sometimes worse than other times (especially if there's any blood).

I know I'm healing because of a "deep itch." :)

After I evacuate my bladder, there are visible traces of blood and sometimes what appears to be a clot or something (rarely, now). Normal?

I occasionally feel pain, especially after activity. Normal?

Erections are still painful. Normal?

So, I'm back and forth on the BCG.

I'm worried about my cancer becoming life threatening because I chose not to go through 10 weeks of BCG treatment.

Overall - I feel like I'm adrift; and I'm worried; but I feel justified in being worried.

Anyone else been down this road?

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 1551 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: eggie
Yesterday Total Opened: 1 Yesterday Total Answered: 1
Total Posts: 52640 Total Subjects: 6839 Total Users: 8400
Powered by Kunena Forum