Husband Newly Diagnosed

1 month 5 days ago #60613 by 3274151483053a9e9783fe51da012372
Replied by 3274151483053a9e9783fe51da012372 on topic Husband Newly Diagnosed
I truly appreciate you Alan and I look forward to sharing how things go on this journey. Have a wonderful day!

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1 month 5 days ago #60612 by Alan
Replied by Alan on topic Husband Newly Diagnosed
For what little I know, I think you have a good plan ad the right medical team! It is possible there are unknown issues such as the shortage of BCG. There are some other agents that have also worked besides BCG. Dr. Piyush Agarwal at University of Chicago is where I'd put my trust.

Please let us know how this goes as you will be helping others, including myself more!

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: 3274151483053a9e9783fe51da012372

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1 month 5 days ago #60611 by 3274151483053a9e9783fe51da012372
Replied by 3274151483053a9e9783fe51da012372 on topic Husband Newly Diagnosed
I agree with you on the "visual" looking stage 4 diagnosis. Two pathology reports say stage 1 non-muscle invasive. The pathology report states that it is a papillary tumor that was removed. No CIS.

Dr. Agarwal says that BCG is a definite option because of my husband's overall health and the fact that outside of the tumor removal site, the bladder is in good condition. Where the original uro said no at first but now he's on board with it since Dr. Agarwal said yes to BCG. My husband and I agree that if after the 6 wk BCG and the subsequent cystoscopy after that shows a recurrence, he'll want Dr. Agarwal to do the bladder removal.

Again, I sincerely I appreciate your response. I've lurked on the board for weeks and read your thoughtful and level headed responses to other posters which encouraged me to finally post here.

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1 month 5 days ago #60610 by Alan
Replied by Alan on topic Husband Newly Diagnosed
Stage 4 "visually" to me makes no sense. Staging would imply it has metastasized and left the bladder. How could he know that...visually?

Re TURBS are a standard protocol when high grade tumors are found. Dr. Piyush Agarwal at University of Chicago, if memory serves me, both had nice reviews and comments from posters here. If in fact it is stage 1, BCG is the gold standard for treatment. There are a few rare and aggressive tumors at stage 1, cystectomy is the recommendation. Is this simply CIS or papillary cancer? Does your path report ID exactly what this is? This may be the most important question to ask Dr. Piyush Agarwal or your URO.

While a 3rd opinion is rare, it might even make sense with all of the conflicting information you are getting.

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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1 month 5 days ago #60609 by 3274151483053a9e9783fe51da012372
Replied by 3274151483053a9e9783fe51da012372 on topic Husband Newly Diagnosed
Hi Alan,

Thank you so much for responding. The original uro said that "visually" it looked like stage 4 to him before the pathology. When the pathology report came back saying stage 1, he disagreed and wanted to do a second look TURBT to get more samples. Which we later found out was standard procedure but he made it seem like it was out of the ordinary to do a second TURBT. We discovered that people are usually restaged and sometimes upstaged with the second TURBT. We were bracing for it to come back as stage 4 just based on what he told us. He completed the second TURBT a month later, taking samples of the original tumor site, some muscle, and some from his prostate to see if it had spread. Second pathology results came back stage 1, no muscle invasion, no tumor or cells in the prostate sample and no new tumors. He said, in a very surprised manner that my husband's bladder looked really good. It was a bit bizarre that he almost seemed disappointed that nothing else was found. He reaffirmed that the best course of treatment is bladder removal and didn't suggest BCG at all.

We got a second opinion from Dr. Piyush Agarwal at University of Chicago who agreed with pathology that it was stage 1 and that he would recommend bladder removal but he did think that my husband would possibly benefit from BCG.

I've read everything that says T1 is a "slippery slope" and that bladder removal is the only "guarantee" that it won't progress/recur but my husband feels strongly that he wants to try everything including BCG to see how that works in preventing recurrence and progression.

It was incredibly disconcerting that the original uro didn't want my husband to do BCG at all.

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1 month 5 days ago #60608 by Alan
Replied by Alan on topic Husband Newly Diagnosed
Welcome WDS_Peace,

I am a little confused about how your URO can jump from stage 1 to stage 4 from the pathology report. Is there something they are not telling you? Stage 4 implies it has left the bladder or in this case to or from the prostate. There just seems to put a big gap in what is being communicated to you. Is it possible the tumor seen is one that is not the "garden type" and more aggressive? You did the correct thinking in getting a second opinion although that also appears to add confusion.. Thus, anything I would add is simply conjecturing.

It may be time to travel to a teaching or university hospital that is highly ranked. MD Anderson in Houston, Cleveland Clinic, Northwestern in Chicago, John Hopkins, Sloan Kettering, USC etc. to try and put to rest your questions. What area of the country do you live? Perhaps another reader will have ideas. By the way, your medical records are yours so a copy at some point may be helpful.

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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