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Need Advice - Get Another Biopsy or Start BCG?

5 years 4 months ago - 5 years 4 months ago #45159 by CatherineH
Hello and sorry I am late to reply to your post but I have been out of town for a few days. I think you quickly learned the most important forum takeaway point we want our members to have, and that is that you DO have to get yourself informed as much as possible and BE your own best advocate. As Sara Anne mentioned, we are not medical people, just people who have learned about bladder cancer the hard way through our own experiences. I think just hearing and sharing what we have each learned gives us all a more accurate roadmap to better navigate our own medical care and treatment plans.

I'm glad you are here and please post any questions that come to mind as you research and learn more along the way.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 4 months ago #45149 by Walldiver
Thanks for the reminder on who provides the real medical advice. I will depend on the doctors for that. But I am in the process of learning as much as I can so that I can ask questions and be a strong advocate for the best care I can get. The forum has been very useful for that and I thank you.

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5 years 4 months ago #45144 by sara.anne
Please remember that we on the Forum are not doctors and our advice is given for whatever it is worth!!

I do agree that the second biopsy (TURB)(Transurethral resection of bladder area that is suspected of bladder cancer.) is a good idea, and that is what I would do.
It will/should be done under general anesthesia so that they can cut out enough tissue to get a really good idea of the extent of things.

The amount of time for healing, should the next step be BCG, would not be an issue in its effectiveness.

Good luck to you!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 4 months ago #45141 by Walldiver
Sara Ann, you summarized my level of confusion very well. When the doctor told me about the situation – he framed it as a choice. My initial reaction was that it seemed pretty important to figure out how invasive it was, and he agreed right away so maybe that’s the way he was leaning. Perhaps he was trying to give me a little bit of a sense of control of the situation - it’s already clear to me that control is one of the things that you lose through this process. Anyway, the current plan is to do another biopsy (or maybe a TURBT? – this is all new to me and I’m not even sure if there’s much of a difference) this coming week. He said that we could start BCG a couple of weeks later.
As I’ve been thinking about this, the decision seems to hinge on how bad things could go under each scenario. In each case, what are the odds that I pass some type of ‘tipping point’ in the progression of the disease during this period of time? If I start a six-week course of BCG and wait a couple of months to find out it was invasive, it seems like there’s a pretty devastating potential downside to that if the cancer spreads. If I get the biopsy done and wait two or three weeks to start BCG, it doesn’t seem like the potential downside is quite as dramatic. But again, this is all new to me and I don’t trust my judgment and really value inputs from folks like you.
So thanks again to the both of you for your comments. I haven’t seen the pathology report, yet, but will be sure to get a copy and review it. And prepare questions for the doc.

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5 years 4 months ago #45139 by Alan
Sara Anne just about covered what is a confusing diagnosis and protocol. Typically, a second TURB is done 4-6 weeks after the first to heal and to make sure "margins" include muscle to be sure it hasn't become invasive. I know that was done in mine as well as most cases. I second her comment and this might take re-visit of the path report to see how urgent you might want to start BCG with more pointed question for you doc.

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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5 years 4 months ago #45137 by sara.anne
WOW, that is a question, isn't it? Do you have any idea WHAT the doctor might be recommending at all? You are at an excellent center for treatment, so they ought to know what they are doing. While it is great that he is giving you a choice, my feeling is that at this point he could be a bit more directive!

CIS is high grade. It was only on my second TURBT that my CIS was diagnosed. I went through the complete (albeit at a reduced dose as time went on) series of BCG and have been cancer free for five years. I guess I would lean towards a second TURBT....(My first response was just the opposite and as I continued writing this I changed my mind and came back and rewrote it!)

You will be seeing the urologist about every three months during the next two years of so, along with the BCG, so he will be monitoring you. I would ask if he feels fairly sure that he could catch it if things "go south."

How long would a second TURBT delay BCG? You would have to heal completely before the BCG could start. Does the urologist feel any urgency to start BCG or is he comfortable with the delay?

A second TURB is practically "state of the art" in diagnosis, for exactly the reasons you present. At the second pass the urologist KNOWS where the problem or questionable areas are and can give them special attention. IF there is muscle involvement, the treatment might be completely different.

Now that I have muddied the waters a bit....

Let us know what you decide!

Sara Anne

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