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Diagnosed about a week and half ago

2 years 3 months ago #51791 by Ksteigerwald
Sara Anne, That's he said. No treatments. He felt the side effects do not warrant the treatment yet. He wants to observe and see where it goes from here on out. It's possible I will have BCG treatment in the future but for now it is cystoscopies and observation.


Just observation every three months for 18 months then Bi annually for the next 3 or 4 years and then annually from there on out.
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2 years 3 months ago #51790 by sara.anne
Your uro may or may not recommend BCG. For a small low grade tumor, BCG is often not terribly effective. The urologist may not want to put you through that unless it is necessary, or he may feel that is is not indicated unless it returns.

Your results are good news!! Congrats

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 3 months ago #51789 by jroza1
Yep it's good news and now it's on to BCG. This is the best you could have been given under the circumstance. Do you know your treatment plan yet?

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2 years 3 months ago #51788 by Ksteigerwald
Ok, Good news I think. the tumor was 1x .7 x .4 cm. Final Diagnosis is Papillary Transitional Cell Carcinoma Grade I. Comments: No involvement of the muscularis propria is present in the tissue selections.

I am guessing that is a small tumor relatively speaking. I asked the Dr. about the possibility of cutting the cancer out could spread the cancer. He said not to other organs but their is debate whether cutting it out may help spread the reoccurrence. He did not give an opinion of his own other than admit that there is debate about the reoccurrence.

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2 years 3 months ago #51787 by Jack R
Just incase your doc or the nurse did not use the numbing gel, or give it time to work...

Tell the first treating person you deal with at your appointment that your cystoscopy was traumatic ((physically painful) for you. Ask that numbing be done, and that it have a few minutes to work its magic before the exam.

Different docs and nurses seem to have different times they allow for the gel to work.

Spill your guts, let them know how you are being affected. It is part of being a team member in your treatment. I find that it does get easier once you know what is taking place.

Attempt at humor:
Me: Hi Doc
Doc: Drop 'em

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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2 years 3 months ago #51786 by Ksteigerwald
Thank you all for your warm words and advice. It is very much appreciated. I see the doctor for a follow up in a few hours. The worst part of the surgery was the catheter. I was able to get it prematurely removed..Thank goodness. The nurse told me that it was low-grade non-invasive cancer. I guess the Dr. will go into more details at Today's appointment. I am feeling good except having the burden of receiving a cystoscopy every three months.


JOPO "You said your scope was 'traumatic'? Emotionally?" Yes the cystoscopy was emotional. I suppose it is something I need to man up to. I know it was done in my best interest however I almost equate it to being alien UfO being probed or something. The more I do it the more I will get use to it... but the first time was very tough.

Jroza1 "but watching friends with bowel cancer and lymphatic cancer I think my stars every night" You are right on. Actually, I blew off my first scheduled cystoscopy in April. Unfortunately, I have a friend turn 42 last Monday, that has terminal cancer that started with the cervix and led to the bladder and the lungs. Once she got diagnosed, I called the urologist just be on the safe side. Well... If not for my friend god only know when I would have found out. Both of you are totally correct. I need to be very thankful that what I have is for the most part manageable, albeit uncomfortable.

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