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Newly diagnosed, had a TURB two weeks ago.

4 years 7 months ago - 4 years 7 months ago #48256 by Alan
Marble, it certainly sounds like a UTI. It's hard to drink too much however, while extremely rare there have been a few people that have flushed electolytes or sodium out creating problems. For sure for those on BCG it is good to drink lot's of water to purge it out. 3 liters? I believe many recommend that as a daily intake. For me, drink when you are thirsty-listen to your body!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 years 7 months ago #48255 by Marble68
Could be a UTI - will have to find out.

How much "hydration" does one do? Should I be drinking the standard, recommended 3 liters of water a day? That's actually quite a bit for me and very hard to do. If I do it, I'm in the bathroom ALL THE TIME. :)

In regards to BCG side effects - I completely understand. The person warning me about the side effects is my Doctor though - telling me over his 20 years of practice it can be bad.

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

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4 years 7 months ago #48254 by sara.anne
You are right...severe side effects of BCG are extremely rare. If you watch TV and listen closely to the drug ads you would never take ANYTHING the listed side effects are so gross!! A physician friend of mine said that if aspirin were just coming into the market today, the side effect list would scare anyone away! The most common, as you have read, are fatigue, bleeding, urgency. And MANY of us are very grateful for BCG.

Your doctor is also "right on" with respect to a second TURB once the results of the first one are in. You quoted a 30% error rate...I think I have seen even higher, but can't put my finger on the statistics right now. The first TURB shows what is there and where it is. But the second allows the doctor to double check and also get new samples of areas that look a bit suspicious. My own second TURB changed my diagnosis from low grade papillary to CIS high grade!!!

It is good to know that you are in good hands, isn't it?

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 7 months ago - 4 years 7 months ago #48253 by Sdca1
Marble, what I meant about the muscle tissue was that it was present in the resection sent for pathology but no cancer was found in it. It's an important note on the path report that they confirm muscle tissue was submitted otherwise there is no way to conclude it's non-invasive. That's one reason, according to my uro, that second TURBS are done (they didn't get a deep enough sample). Other reasons include to verify all the tumor was taken out the first time (especially important if high grade) and simply to get another sample since re-TURBS can conclude a different pathology around 30% of the time (according to my urologist).

I met with a urologic bladder oncologist at an NCI center today, and he was pretty clear that with Ta low grade you definitely don't want to treat with BCG (for the reasons Sara Anne mentioned) and for Ta high grade you do need BCG. It sounds like your urologist is very experienced and it sound like your pathology showed a tumor on the borderline of low/high grade which is why he recommended what he did but still said he'd be willing to do BCG if you wanted. Feeling comfortable with your urologist and your proposed treatment plan is very important so glad to hear you are at that point. As long as you are watched very closely with the regular scopes, they can catch anything that might warrant a change in approach early.

As for me, the next step is another TURB in 2 weeks then BCG after that. I'm nervous about side effects and the shortage I've read about, but will deal with all that when it comes. What you posted about arthritis and someone losing vision is very unsettling :( I'm hoping those types of severe side effects with bcg are pretty rare ?

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4 years 7 months ago #48250 by DougG
Marble,

Do you think the painful urination might be a UTI? It would be worth checking out either with your primary doctor or your urologist.

Best wishes,
Anita

Anita
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4 years 7 months ago - 4 years 7 months ago #48249 by Marble68
Also - I noticed I fat fingered my age.. lol - I'm 47. I've updated my signature.

Maybe it is wishful thinking... hahaha..

Anyway, I'm a peace with the path my Dr. has me on - and he said he sees 4 or 5 bladder cancer patients a month.

I know myself - and I'm a bit of a worrier so I'm trying to remain pragmatic and listen to the Dr.

After reading what BCG does to some people, I can understand my doctors speech about it.
He told me how perhaps it that people only remember the negative, but his patients who've taken BCG have have serious side effects ranging from permanent arthritis to joint damage.

He said he'd do it if I wanted it, but dang - after reading how one person here was having to use a walker and lost vision in one eye - I'm fairly hopeful I never have to take it.

But I guess I can get a copy of my pathology report and send that to another Dr for a 2nd opinion. I'm going to meet with my regular MD first and get his advice.

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

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