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Newly Diagnosed with non invasie Citu Cancer??

2 years 7 months ago #51103 by jasdelta
Thanks again for your encouraging words, I am staying positive, which I think is very important to do.

As one might imagine I was quite surprised at my diagnosis, as I had no symptoms prior to having my kidney stone removed. So my cancer must have been caught very early. One of those good news bad news things to happen.

Again thanks for your helpfulness.

Moving forward!!

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2 years 7 months ago #51102 by sara.anne
You have much more than just a "chance" of survival!!! With BCG treatments the odds are truly in your favor!

There are several different protocols for BCG. Most have a 6 week initial period where you receive BCG once a week for six weeks. Some urologists do not do any more than that, but research has shown that following this with a "maintenance" regimen really does increase the effectiveness. My maintenance schedule was that every three months for up to 2 years I had three weeks of once a week BCG. I am really glad I did it, but by the time 2 years were up I was glad to be over it!

The usual exam schedule is to have cystoscopy every three months for 2 years, then every six months until 5 years have passed, and then every year forever! One of the nasty little secrets of bladder cancer is that it often recurs...
BUT as I mentioned before, I am 8 years out and counting!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 7 months ago #51101 by jasdelta
Dear Sara Anne,

Many thanks for your informative reply.

Yes my diagnosis is what you noted CIS.

I will peruse the forum as you suggest to read the accounts of others who have posted here.

It is encouraging to know that I do have a chance of survival with this type of cancer and the treatments I will be having.

After your initial treatments of 6 weeks, how many more did you have to have after that for maintenance? Do you now have to have just a yearly checkup?

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2 years 7 months ago #51100 by sara.anne
Welcome to the Forum!!

I assume that you have been diagnosed with CIS (short for carcinoma in situ). This is a high grade form of bladder cancer that appears sort of like a rash on the bladder lining rather than a solid lumpy tumor. High grade means that it has the potential to spread, which is why BCG is almost always used to treat it ASAP.
BCG can be very effective in the treatment of CIS.....that is the route that I took and I am fully healthy eight years out!

Your urologist is correct in that the side effects do increase as the treatment goes on. BCG is a modified tuberculosis bacterium that was developed many many years ago as a safe inoculation for children to try to prevent TB. In bladder cancer it is used to stir up the immune system in the bladder lining so that it attacks any cancer cells that are present. As the immune system gears up, your body will feel more side effects. The usual are bleeding, urinary urgency, burning, and fatigue. THESE SHOW THAT THE BCG IS WORKING! While they can be annoying, these side effects are nothing compared to those that people who must have systemic chemotherapy go through. As your treatment goes on, if the side effects become too much, the dose of BCG can be significantly reduced....as low as 10% of the initial dose in some cases. By the time I was through with my initial 6 weeks of treatment, and the two years of maintenance treatment, I was down to 1/3 the initial dose.

You will do very well, I am sure. There is a LOT of information about others' experiences with BCG in the material on this Forum. For example, we have archived a lot of posts at the top of the heading "Non-Invasive". You can also used the search function at the very top of this page.

Good luck to you. You are on the right path.

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: jasdelta

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2 years 7 months ago #51099 by jasdelta
Hello Folks,

I just had my first BCG treatment last Tuesday after being diagnosed with early stage Citu cancer. I think that is the right terminology or is it In Citu?

Anyway my urologist found it upon inspection of my bladder while removing a kidney stone.

So far the side effects of my first BCG treatment were minimal, no blood and very little pain in urination for the first 48 hours then nothing. The doctor tells me that the side effects will get worse as I progress with treatments 4, 5 and 6, does this sound right?

Any guidance as to what to expect going forward would be appreciated.

Can the BCG treatments cure this type of cancer?

Many thanks,

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