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Cystoscopy - post initial BCG treatment

7 years 2 months ago #52839 by markermountain
Replied by markermountain on topic Cystoscopy - post initial BCG treatment
Hi Dave,

I was diagnosed with T1 Invasive on 6/1/16

I had my first TURBT on 6/3, of course he didn't get it all so another on 6/27. Complications from internal bleeding resulted in a 5 day hospital stay and another surgery...but that's another story~

I had 6 BCG July-Aug ending on 8/18 with a cysto to look early Nov. which was all clear. Another cysto the first of Feb and now in a 3 wk BCG maintenance. My Dr insisted on cysto every 3 months and BCG maintenance the same for 18 months. If no reoccurrence, step up to 6 months for all for another 18 months, then up to a year, and so on.

My Dr relocated to another state, and as I live in a rural area there is no permanent urologist to take his place, so I started shopping elsewhere. I visited 3 Drs, one temp replacing my old one, one small rural referred by a friend, and the last straight to the big guy at Winship Cancer Institute at Emory University in Atlanta. Believe it or not, all had the same treatment plan in mind. Nonetheless, still glad I went for a 2nd, and even a 3rd opinion for my piece of mind.

Remember all three ordered 3 month cysto, and BCG maintenance. It is absolutely worth it, in my opinion, to get advice from several Drs.

Praying for you, Darlene
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7 years 2 months ago - 7 years 2 months ago #52833 by Alan
Replied by Alan on topic Cystoscopy - post initial BCG treatment
Dave,

You want that follow up cystoscope 6 weeks after BCG to peek and see that no growths are seen. THAT is the only way to know. I won't say you doc is doing "inferior work" however, since this is your first round that is what is normally done, checking to be sure it has worked! IF tumors are seen at 6 weeks then you attack another time sometimes adding interfuron or possibly another agent. A lot depends on your pathology and individual situation. If clear then maintenance BCG is usually done 6 weeks after the scope or a total=3 months. Waiting 3 months before ANY follow up is just not timely. You want a URO that REALLY knows his stuff on this cancer. It is sneaky but beatable as many on this board say.

Dr. Svatek has a great reputation at UTSA. Plus, I understand MD Anderson is branching out to some kind of relationship at UTSA. Interestingly he just did a cystectomy on a friend (Indiana pouch) last week and everything went well.

Answering your question on bladder cancer patient load. Yes, many practices for some reason don't see a heavy load. 2 others getting BCG certainly isn't a lot but, there could be many with low grade and different treatment protocols or a lull. I still say with what you are posting a second opinion and follow up would be in my wheelhouse.
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 2 months ago #52832 by dtat60
Replied by dtat60 on topic Cystoscopy - post initial BCG treatment
Thank you, Alan, for your feedback. I hear ya! I am a bit concerned after having to question the initial 6 month appointment for the post-BCG exam. I'm not too sure how many patients he sees with BC but I asked the MA if she was giving any others BCG beside myself and she said two others. She also mentioned the BCG shortage a few years ago and having some folks very frustrated with the delays. So I have to assume that it is not that unusual for them to see Bladder Cancer patients?

After the CT scan, cystoscopy, initial diagnosis, 2 turbts (one of which was bluelight) and initial BCG treatments I don't feel that I am getting inferior treatment although I don't get a "warm, fuzzy" feeling that the Dr. is genuinely interested in my case. More like just another appointment, another patient.

If my initial BCG has not worked then I have been considering trying to get with Dr. Robert Svatek (Cancer Therapy & Research Center (CTRC) at the UT Health Science Center San Antonio).

To be perfectly honest, I have no experience with Doctors. This Bladder Cancer diagnosis is the first time in my life that I seen a doctor for anything other than yearly checkups. I don't like to complain but the Engineer in me sometimes has "Great Expectations".

Peace and Love, 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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7 years 2 months ago - 7 years 2 months ago #52831 by Alan
Replied by Alan on topic Cystoscopy - post initial BCG treatment
I can't say enough enough good things about Dr. Harris. VERY thorough and straight forward! I am sorry your first round didn't work but, we have read about second trys working!
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 2 months ago #52829 by Jfoutz
Replied by Jfoutz on topic Cystoscopy - post initial BCG treatment
Alan,
It is so ironic but I looked up uros in marble falls and Dr. Harris is listed. I was hoping to call him and see if he would do my BCG treatments since it's only 10 minutes from my house there. I've been going to UTSW in Dallas, but going every week is wearing me and my husband out. So glad to hear someone knows and has used him. If my doctor will let me try BCG one more time I will call him. My first series failed but I didn't get to do the maintenance treatments.
Thanks again for your post!
Janice
Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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7 years 2 months ago #52828 by Jfoutz
Replied by Jfoutz on topic Cystoscopy - post initial BCG treatment
Dave,
I'm so glad you moved your appointment up and I would ask for the BCG maintenance treatments to try and keep that away. Better safe than sorry and remember nobody cares about our health as much as we do. Be a pest!!
Janice
Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018
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