Just had first TURBT

7 years 11 months ago #51010 by Houston Dave
Replied by Houston Dave on topic Just had first TURBT
I should probably disclose that I am a physician, a diagnostic radiologist practicing in Houston. I chose my urologist from one of my colleagues. We are in North Houston, not at MD Anderson. He is an excellent surgeon, with a great reputation that I and my colleagues can vouch for personally.

He plans on a six week induction of BCG, but came right out and said he doesn't often do a repeat, but I haven't asked him strictly about maintenance BCG. From my brief review of the literature, there is little doubt that maintenance BCG is the way to go. It seems that just the protocols and dosages are up for debate. Like how far out in time you continue and how much to reduce dose as needed because of toleration/complications.

Looks like urine cytology is good to get, maybe around the times of repeat cystoscopies.

I'll continue with my urologist through the 2nd TURBT and induction, but next time I see him at work or in his office, I'll ask him if he will do maintenance BCG or if he suggests a 2nd opinion from MD Anderson. Seems to me it's a must do these days for T1(Hg).

I don't know if it is appropriate, but I would be happy to tackle imaging study questions related to bladder cancer, upper tract disease, metastatic disease, use of PET CT, etc. If I don't immediately know the answers I can find out.

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7 years 11 months ago #51009 by sara.anne
Replied by sara.anne on topic Just had first TURBT
As did Alan, I offer you a qualified welcome!!

As for BCG, there are lots of different protocols out there. But it has definitely been shown that an induction phase, such as your doctor recommends, AND a maintenance regimen can be very effective in preventing a recurrence of high grade bladder cancer. My uro did the six weeks, then off for three months and then three weeks of treatment, off three months...until two years had passed.
I had my 8-year exam yesterday and ALL CLEAR.

Yes, there are side effects with BCG (not nearly what people getting traditional chemo have, however) and they do tend to get worse with more treatments. The purpose of the BCG is to kick up the immune system in the bladder lining tissue so that it rejects the cancer cells. And as the immune system responds, more and more irritation results. The side effects tend to be irritation (sort of like a bladder infection), fatigue, bleeding, and urgency. If they get too bad it is possible to reduce the dose, even down to 10% of the initial dose. I got through the entire series and was at 1/3 the initial dose by the end.

Dr. Donald Lamm is one of the pioneers of BCG therapy and he is now in private practice. While my uro did not use Dr. Lamm's exact protocol, I find that his web site contains a lot of useful and interesting information.
www.bcgoncology.com/drlamm/

Good luck to you.

Sara Anne

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

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7 years 11 months ago - 7 years 11 months ago #51007 by Alan
Replied by Alan on topic Just had first TURBT
Welcome Dave, we are all sorry for the reason to be here but, as you mentioned there are many good people here. Yes, a second TURB is usually done when high grade is DX and there are many theories for BCG. My URO had me do one a week for 6 weeks then 6 or 8 off then another round of 6. There are many protocols with probably the majority using what you posted in the first group. My URO did mine reasoning that there are always risks in every procedure and he theorized if it was to work, it will work and that is it. From my readings a well respected (I think retired) Dr, Herr from Sloan Kettering used just 6 and that was it. One thing for sure, BCG works for the majority of patients.

I presume presenting as Houston Dave, if you have ANY trepidation on you medical team, MD Anderson is world re-knowned for cancer as I am sure you are aware. They are my backup if ever needed living in New Braunfels.

Ask away as needed!

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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7 years 11 months ago #51006 by Houston Dave
Just had first TURBT was created by Houston Dave
Had one episode of gross hematuria 3/25/16. Cysto in office showed bladder tumors. CT A/P neg for cancer, just a couple cysts in kidneys. TURBT 4/12/16 - 1st path report is T1 (Hg). Will have 2nd TURBT 5/17/16. If no upstage on that, will get BCG induction, then in office cysto every 3 mo for 2 years, then every 6 mo for two more years, assuming no recurrence. I know with T1(HG) there is a fairly high rate of recurrence, esp in the first year or two.

I asked him if he ever does a second course of BCG, but maybe that is different from maintenance BCG. He said there was a study about a second course of BCG but not many patients could tolerate it. How often is maintenance BCG after initial induction?

I think this forum is a fantastic thing for us and I thank all who keep up this forum, in advance.

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