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4 months 1 week ago - 4 months 1 week ago #57749 by Alan
That tells me they probably didn't get enough sample for margins. The Doc wants/needs some muscle sample to be sure it has not been invaded. Normally, a second TURB is done when there isn't muscle specimen or the tumor is high grade just to be safe. I have learned more questions asked is better and I am not always good at that in the doc's office. It really looks like a second opinion for clarification and peace of mind would be good.

With the shortage of BCG your group might be talking about a chemo/bladder wash is lieu of BCG but, not systemic chemo I presume. Used as a wash chemo also has had good success although BCG I believe has slightly better results. Everyone's system reacts differently. As Sara Anne said radiation s used in only unusual situations.

You really need to get this staged properly as stage 1 (lamina propia) is treated differently than stage 2 (muscle invasion).

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 months 1 week ago #57748 by KS
Alan, The final Pathological findings are:
HIGH-GRADE PAPILLARY UROTHELIAL CARCINOMA
FOCAL INVASION OF THE LAMINA PROPRIA IS SEEN
MUSCULARIS PROPRIA IS NOT IDENTIFIED.

As I said, I didn`t ask many questions that day so I dont know what stage it is. The surgeon simply stated the possibility of both chemo and radiation. That would be determined by the oncologist.

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4 months 1 week ago - 4 months 1 week ago #57747 by Alan
Chemo and radiation? That is NOT a normal protocol for non invasive bladder cancer. Immunotherapy (BCG) is the usual treatment if it has not hit the muscle inside the bladder. I see you said it hasn't hit the bladder wall and that confuses me further as that would be the last part of the bladder and very serious if it is that close. Do you have a grade and stage quoted from your URO/and pathologist? Also, do you have a pathologists terminology on their findings? While none of us are doctors sometimes there are key words to get clarification on. As Sara Anne posted a second opinion may make sense to clear any confusion.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 months 1 week ago #57746 by KS
sara.anne,
Fortunately for me the surgeon is based with a medical group that specializes in urology cancers as does the oncologist I will be seeing next week. If at any time I do not feel comfortable with his plan of treatment, I wont hesitate for a second opinion.
Hearing that you were diagnosed 11 yrs ago gives me great hope and am so glad for you. Thanks for the words of advice and encouragement!

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4 months 1 week ago #57745 by KS
Alan, no it hasnt hit the muscle as far as they could see, thank goodness, just the bladder wall. I most definitely will keep posting and looking for those that have been through this to offer suggestions. Thank you.

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4 months 1 week ago #57743 by sara.anne
So sorry to hear your diagnosis. We all handle things in different ways and no way is "normal." They all are "normal." I was diagnosed with breast cancer many years ago and I took it like you are taking your diagnosis. No excitement/dread/panic. Just business to take care of. I was quite different when it was bladder cancer....my first thought was "now I know what I will die of." Well, I didn't die of it and 11 years later I am still here and have had no recurrences.

Based on your diagnosis, I would think that a second opinion would be a good idea at a place that handles LOTS of bladder cancer cases. Your situation is one where there are multiple directions for treatment and you want to be sure that you get the best advice possible. I would be a bit wary of any radiation since in many cases it can make further treatment difficult and can lead to radiation effects on surrounding tissue that can cause life-long problems. You really need to know and understand all your options.

You have the advantage of a lot of medical knowledge and the ability to understand the terminology used so you are in a better situation than many.

Wishing you all the best

Sara Anne

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