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Bladder tumor

3 years 9 months ago #52161 by sara.anne
Thanks, Alan!!! This is an issue that has been troubling me for some time. There are times when a Second Opinion is critical and we strongly advise patients to get one...(I am sort of saying "hey, something is wrong here and you better check it out!) BUT a Second Opinion is not always a solution for something if there is no problem. Does that make sense?

Any way, thanks for the kind words!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 9 months ago #52160 by Alan
Sara Anne,

You penned so much better what I was trying to communicate! Well done!

Alan

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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3 years 9 months ago #52159 by sara.anne
I'll bet that you are happy to have this one behind you!!

You may have had a wash with mitomycin after the biopsy...or maybe not if there were a lot of "wounds" from the burning off of the other "spots." A catheter is not necessarily an indication.

Of course, a lot of your questions will depend on the path report. If it is high grade, does he recommend BCG or some other treatment?

As for a second opinion, that is always a good idea IF YOU KNOW WHAT QUESTIONS THE SECOND OPINION IS SUPPOSED TO ANSWER. If after you digest the results of the TURB/pathology, you have some concerns and questions about the treatment that your urologist is recommending, you absolutely want to have a second opinion. If you are very comfortable with his plans (and you have checked out his reputation...which it appears you have) it may not be necessary. A second opinion just to get a second opinion is not necessarily efficient or helpful. As they say, "It Depends."

For example, I had checked out my urologist's reputation and training background. He trained with the best. He has been very open to my questions and we have had many discussions. When the 2nd TURB results were back (and the 2nd TURB was also an indicator that he knew what he was doing) and he insisted I cancel a long-planned trip to China to start BCG, I checked out the path report and his recommendations with a friend who is an Army urologist. She confirmed that everything he said and did was "right on." He also told me that if the time came to recommend a cystectomy he would INSIST that I get a second opinion. So I have not felt the need for going after one.

In another, totally unrelated condition, I had an orthopedic surgeon who I felt was "surgery happy" and was rushing me to surgery. The whole deal just did NOT feel right to me. I pulled out, got a second opinion which recommended trying some more conservative options first. Three years later, problem solved, no surgery.

I guess the reason I am telling you this long story is to say that IF you feel totally comfortable with your doctor and IF his plans conform to what seems to be the standard of practice, you are fine. IF at any time you feel uncomfortable or uneasy or unsure SECOND OPINION TIME!!

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: Alan, dtat60

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3 years 9 months ago - 3 years 9 months ago #52158 by Alan
Dave,

Do not be surprised depending on the TURB that many times a second one is done to be sure on margins, especially if it is high grade. That would be an additional question to ask Dr. Svatek if it is. As you mentioned he does have a very good reputation corroborated friends and aquaintences of mine. I wouldn't be afraid to ask either if he would encourage a second opinion just to have a set of "fresh" eyes. At the same time I didn't get the second as I didn't fully understand our challenges but, my URO was very thorough such as personally reading the path report and personally reading my scans. So, I fully trusted him and he earned it!

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.
The following user(s) said Thank You: dtat60, Regor

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3 years 9 months ago #52156 by dtat60
I go tomorrow for my followup after the TURBT. My Doc is not that talkative so I want to make sure to have a list of questions. Once I hear my pathology results not sure what my reaction will be and not sure I will remember to ask all of the most important questions. Some items that come to mind are -

Do I have any physical restrictions - push mowing, riding mowing, using tractor, any limit on lifting, using a chainsaw, can I do my usual 5 mile morning walk (I really miss this), Sex OK? I have done almost nothing since last Thursday and I am going bananas!

Did I have intravesical chemo after surgery? Prior to my surgery I was told that I would have this and based upon the fact that I didn't have a catheter after surgery I don't think this occurred - wonder why not?

What about the other suspicious spots that he cauterized during the procedure? He said that he removed my primary tumor and also 3 other "suspicious looking" spots?

Second opinion? I do feel a little intimidated in asking this question but from what I have read this is a good idea - in all cases?

Any specific questions concerning the pathology report?
Any specific questions based upon my "staging results"?

Is my 1CM non-obstructing kidney stone in my right kidney an issue now or in the future?

Anyone think of anything else that would be important?

Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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3 years 10 months ago #52143 by Alan
Dave,

You are getting some great advice and comments. I live in New Braunfels so we are close. The path report will dictate the next step. BTW, Dr. Svatek has a great reputation and the UT health system has beefed up their bladder department. So, it certainly and option along with MD Anderson. I have not really heard much about the Austin area. On this type of cancer one thing is certain. You nwant the best and a department devoted all or most to bladder care.

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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