mixed feelings

Hello all,

Im a contributor that lives in the Netherlands. Id like to find out about treatments and experiences of other bladder cancer patients. Maybe protocols for treatments differ in our countries.

In March this year i was diagnosed after a cystoscopy with bladder cancer, after one week i could undergo a TURBT already and the results were not assuring me of any good. They took away several tumors, T1 G2,3 and CIS.

At first i was happy that it was non invasive bladder cancer. Only later i realised that the severe agression is a also very high risk factor. I guess i was not prepared to have questions immediately. The doctors asked me whether i would choose for BCG-instillations or radical cystectomy, they recommended because of my age (37) to go for bladder sparing treatment. I was confused i wanted to discuss first with my girlfriend and relatives what to do. They adviced me to follow doctors advice.

So i got 6 BCG instillallations and had a surgery TUR mid june in which biopts were taken. I was stressed and nervous very much until i heard results on 3rd of july. Most of the biopts were clean, in one there was a microscopic CIS found, therefor i underwent immediately 3 follow up BCG instillations in july.

After which i was treatment free for one month and i could go to Italy and Sardini for about 3 weeks ad i felt as if nothing was the matter could release my stress but sometimes 'saw' something in my urine (a tiny bloodcloth) back because of that (but also realised BCG has such effects)

In september i had an operation again TUR in which they took biopts and after operation doctor could tell me he found some 'point' again that was 'bothering' still.

I got really scared and nervous waiting again for results.

Those results i heard two weeks ago. What they found was 1 little point, not tumor yet and already undergone resection, T1 G2. The CIS and grade3 danger disappeared and apparently reacted well on BCG.

This cancer that was not gone probably reacted not well on BCG and therefore my continuing treatment would be MMC Chemo instillations to try to get rid of the non responding to BCG cells.

I was confused, was it mostly good news (because the direct threat of agressiveness and CIS is gone) or mostly bad (because the disease just wasnt away and back already seen with the eye)

In december i will have a cystoscopy, not an operation with biopts, i wonder what this change indicates, and i wonder why the follow up BCG are not given now where as in Lamm schedule it should be after 6 moths also, can they do BCG later if needed?

Is MMC in combination BCG highly effective? what is known about those joint together bladder sparing treatments? Who has experience with this or with treatment of similar bladder diagnosis?

 Now i have 4 MMC instillations in one month (until 20th october) and afterwards once per month, checked by cystoscopies every 3 months. Im afraid of maybe to much believing in sparing bladder and that radical cystectomy might be safer after all. Also i dont want to miss the chance that bladder sparing solutions might work out.

best regards,

Jonk

 

 

 

 

 

 

 

 

 

 

 

Henry Author