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10 years cancer free

1 month 1 week ago #57329 by sara.anne
Your urologist will be doing cystoscopy every three months for about two years to check for any signs of a recurrence if he follows the usual protocols. If he sees any sign that it has returned he probably would do another TURB. If there are no signs of a recurrence it is unlikely that he would be doing a TURB. After the two years have passed your exams will be probably every six months until five years and then annually forever. Fortunately I have not had a TURB since my second one at the beginning. Along with my now annual exam every five years he requires a CT urogram and he does cytology with every annual exam. Your schedule will probably be somewhat similar

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 month 1 week ago #57327 by Regor
Sara Anne - Your past experience quoted below and mine are very close. Upon Scope, my Tumor was 3d (mushroom type papillary growth). The initial TURB was performed, and pathology came back with CIS. So I just finished my Induction 6 BCG and await Scope #2.

If CIS continues to just show as irritation on the surface and doesn't then grow outward, from your years on the forum, does this then prompt additional TURB to see if the CIS is growing inward to rule out invasion?

sara.anne wrote: Hi there, Mareens!

Just a few words about second TURBs. The purpose of a TURB is twofold. The first is to obtain tissue samples to be sent to the pathology lab so that an exact diagnosis can be made. The second is to remove any solid tumors. Unfortunately CIS does not present as a solid tumor but instead is more like a rash on the surface of the bladder lining.

A second TURB is indicated if there is any uncertainty about a diagnosis . My situation is a good example The first TURB showed that I had papillary carcinoma which is like little mushrooms growing up from the bladder lining and these were removed. The pathology report indicated that these were low-grade bladder cancer but the report also said that there were areas of irritation with some abnormal cells . Therefore my urologist recommended a second TURB to try to determine what this might be. During the second TURB he paid special attention to the area where the so-called irritation was found and took multiple samples which were found to be CIS which as you know is high grade. I then had BCG treatments similar to Nancy and have been cancer free for almost 11 years .

While a TURB can remove something like papillary tumors it cannot remove CIS so your doctor is correct. If the cancer is still noninvasive BCG would be the most likely recommended treatment.

Sara Anne


CIS DX Jan 2019

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1 month 1 week ago #57326 by sara.anne
Hello again, Mareens!!

Was just speaking to a neighbor who commutes between here and South Africa for business. He is on his way there again tomorrow. It is a beautiful country!

There is a LOT of information on BCG on this Forum which you can find by using the SEARCH function. Please remember that people who have problems tend to post more than those who don't. As for my personal experience, I was not on HRT at the time since I had previously had breast cancer that was hormone receptor positive. Again, my PERSONAL philosophy is that a healthy life style is a good idea no matter what and I do not subscribe to extra supplements or herbs or concoctions that are supposed to do whatever.....NO SMOKING, however particularly since my husband died of lung cancer!

The side effects of BCG vary from patient to patient. They are much less than if you had to undergo systemic chemotherapy as is necessary with invasive cancers. BCG is instilled directly into the bladder and not into the body as a whole. You try to keep it there for about 2 hours. Since the purpose of BCG is to stimulate the immune system so that your bladder rejects the tumor cells, it does take a while to work. At first you feel minimal side effects once the first half day or so is over. As you continue to have BCG treatments the side effects probably increase, and this does indicate that your immune system is "kicking in." The most common side effects are urinary urgency (as if you had a bladder infection), bleeding when you urinate, and fatigue. Most of us plan to take the day of instillation off work but are able to return the next day (especially if a bathroom is nearby!) If the side effects become intolerable, it is possible for the urologist to use a reduced dose. Your experience may be different from what I described, which is sort of the typical reaction.

Those of us who have CIS should be truly grateful to have BCG since it has a very good record with CIS.

Sara Anne

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

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1 month 1 week ago #57325 by Mareens
Dear Sara.anne

Thank you so so much for your positive and informative response. I am feeling so much better. I understand now why a second TURBT is not essential. Please tell me what side effects you had or were they minimal. Were you on HRT at the time. Is there anything that you have been told to limit or stop altogether. Do not want to aggravate my CIS and want to give my body the best chance of beating it. I am sure this would be beneficial for all on this site as well.

Thank you so much for responding in the first place.

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1 month 1 week ago #57323 by sara.anne
Hi there, Mareens!

Just a few words about second TURBs. The purpose of a TURB is twofold. The first is to obtain tissue samples to be sent to the pathology lab so that an exact diagnosis can be made. The second is to remove any solid tumors. Unfortunately CIS does not present as a solid tumor but instead is more like a rash on the surface of the bladder lining.

A second TURB is indicated if there is any uncertainty about a diagnosis . My situation is a good example The first TURB showed that I had papillary carcinoma which is like little mushrooms growing up from the bladder lining and these were removed. The pathology report indicated that these were low-grade bladder cancer but the report also said that there were areas of irritation with some abnormal cells . Therefore my urologist recommended a second TURB to try to determine what this might be. During the second TURB he paid special attention to the area where the so-called irritation was found and took multiple samples which were found to be CIS which as you know is high grade. I then had BCG treatments similar to Nancy and have been cancer free for almost 11 years .

While a TURB can remove something like papillary tumors it cannot remove CIS so your doctor is correct. If the cancer is still noninvasive BCG would be the most likely recommended treatment.
From your description it sounds as if your doctors are doing exactly what is done here in the US.

There are several different protocols used for BCG administration here . One of the most common in the one that I had which was six weeks of BCG once a week followed by a recovery period of several months and then maintenance BCG treatments once a week for three weeks every two months or so for a period of two years . Some doctors use a different schedule for the maintenance treatments and they all seem to be similarly effective. I didn’t do anything special like diet or supplements but just lived a normal relatively healthy life .

I always recommend a second opinion at a center like MD Anderson if there is a problem with a diagnosis or a complicated case or an on usual form of bladder cancer. However in your case it appears that your doctors are doing exactly what would be recommended here

Wishing you all the best

Sara Anne

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

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1 month 1 week ago #57322 by Nix
I do like to be positive, but admit when I heard CIS I was terrified!
I had some great doctors that talked to me and laid out the facts of CIS and that helped a lot! After all my BCG I went to a large cancer center near me, and every three months had a scope. Nothing came back.
I did drink a lot of water to flush the bladder and still do. I also ate a lot of broccoli, I was told that helps, and of course it doesn’t hurt .
Best advice: get the best specialist you can and do as much research as you can, every step of the way.
You can do this!!! Keeping good thoughts your way

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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