Newly diagnosed, had a TURB two weeks ago.

6 years 4 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.

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6 years 4 months ago #48227 by sara.anne
Replied by sara.anne on topic Newly diagnosed, had a TURB two weeks ago.
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
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6 years 4 months ago #48228 by fighterm
Replied by fighterm on topic Newly diagnosed, had a TURB two weeks ago.
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.

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6 years 4 months ago #48229 by sara.anne
Replied by sara.anne on topic Newly diagnosed, had a TURB two weeks ago.
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

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6 years 4 months ago - 6 years 4 months ago #48230 by Marble68
Replied by Marble68 on topic Newly diagnosed, had a TURB two weeks ago.
Yeah - most certainly did not want to join the club - but here I am. ha ha..

That's the sense I got from my Dr; that it was better to wait before deciding on BCG.

I'm sure every case is different. I did call his office and ask for some clarification, though.

My biggest fear is they go back into my bladder in 10 weeks and find cancer again but worse this time.

They're quick to call me back and answer any questions, though.

Ever since my sister died of cancer about 6 years ago, I've always paid extra during annual checkups for extra cancer marker / screening bloodwork by my family MD.

Last year they stopped doing it and even though I asked they wouldn't. I finally demanded to know why they weren't doing it - even though I was asking for it and paying for it (it wouldn't be in my lab results they mail me). They told me ACA rules don't allow them to anymore because they're general practitioners, not specialist.

That's what they told me. Seriously.

I'm hoping there's a rule that lets this be done now that I've been diagnosed with cancer.

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

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6 years 4 months ago - 6 years 4 months ago #48231 by Sdca1
Replied by Sdca1 on topic Newly diagnosed, had a TURB two weeks ago.
Hi Marble, we seem similar in age and diagnosis. I'm 41 and was just diagnosed with non-invasive high grade bladder cancer - no invasion into muscle or the layer below the muscle (lamina propria) so cTa G3. I just met with my uro and am meeting with a uro oncologist tomorrow, but my uro wants to re-TURB to confirm superficial disease (he said initial TURBS are incorrect about 30% of the time) and if all is still non-invasive do BCG. Even though the path report states muscle was present in the sample, he still wants to go back in. This actually relieves me, NOT because I'm looking forward to another TURB mind you, but because I think he's being very thorough.

The watch and wait method your doctor suggests seems to be more geared for superficial LOW grade as opposed to superficial high grade, even if you are on the lower side of the high grade, especially after only one TURBT. Maybe consider a second opinion with someone who specializes in bc just to put your mind at ease?

I'm really interested that your path report gave them enough info to determine the level of high grade it is. I obtained my path report and it just says high grade, it doesn't give any specifics as to how abnormal the cells were and if it's lower-high grade or upper high grade. I'll ask the bc doctor I'm seeing tomorrow. From what I've researched, there used to be 3 grades, but in 2004 the best practice became to just classify the lesions as high grade or low grade and base treatment from there.

My case is also complicated by a diverticulum so I think they want to be more aggressive with treatment.

But my best advice to you is if you are questioning what to do definitely seek a second or even 3rd opinion. It can't hurt and in most cases helps clarify things.

Best of luck to you
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