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cannot go on right now

10 years 3 months ago #20829 by orpheus
Thanks to everyone who got me going again, I have an appointment with a new and highly recommended urologist.
I am now having to stuggle to get my medical records released to me. I cannot believe the obstructionism that supports so much of the medical profession today, gate keepers mostly. I know that most of you trust and respect your doctors, I did too. It is very hard having to find another doctor years after putting your whole life into previous doctor's hands, and to rephrase my dilemma: am I afraid that the BCG is not working and in denial? Everyone seems so sure and confident in their medical care here, not to mention full of well researched knowledge. It takes a real effort to keep up with all the new theories and still live a life outside of bladder cancer. What confidence you all have.
Rosemary, thank you for all your help. You are wonderful. I meant that the turbs necessarily did not leave anything for biopsy, and not that they were inconclusive.
I guess "keep on keeping on "is the only real advice for us battered warriors.
Good luck to all
Orpheus

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10 years 3 months ago #20600 by pemquid
Adding my voice to those advising you to seek a new urologist. For what it's worth, I just recently also had two tiny ("pinhead size") new tumors, after being clear for 2 years since an initial tumor. My urologist did biopsy on one, and removed both via fulguration; and, because of the recurrence, he's started me on BCG, even though the initial tumor and the 2 new ones were all low grade and non-invasive. You mention that you've already had some BCG treatments. Are you on the BCG maintenance schedule now? (as recommended in Dr. Lamm's protocol)? If you are having recurrences (even low grade ones) while on BCG, I think there are some other things that can be tried, but I'm a "newbie" so am not sure what these might be. I do know that some of the literature suggests that BCG does not work as well for low grade tumors as for higher grade ones and CIS, but my urologist is nonetheless using it on me. (Maybe I need a second opinion too!)

Best of luck, and hope you can get some answers and get set up with someone who you can continue with long-term. My urologist said to me when I was first diagnosed, "We're going to know each other for a very long time." I think he was mainly trying to reassure me that low grade bladder cancer is very treatable.

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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10 years 3 months ago #20593 by GEO
I think Rosemary's response is right on the money. Inconclusive, Thats like being half pregnant...
"Ready to retire", Maybe he already did but just hasn't left the office yet!!!
My 2 cents,
George

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10 years 3 months ago #20573 by wsilberstein
Your faith in your doctor is a paramount part of your treatment. You will never feel like you've made the right decisions if you base them on advice from a physician you don't have faith in. I left the urologist who "cured" my cancer (he was also a colleague and a friend), after being with him for 6 years post cancer and 8 years pre cancer because once he and I were no longer on the same wavelength about my management I began to look critically at other problems in my care and I realized that even though he did a great surgery he was not the doctor for me.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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10 years 3 months ago #20572 by Rosemary
I am in total agreement with all of the above, however, I just have a small question...

What the heck is an inconclusive TURB? :blink: It seems to me that the terms are mutally exclusive....

Orph, it's time to move on!!!

Ro

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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10 years 3 months ago #20571 by sara.anne
My advice is a "thirding" of those above. You need to find a new urologist PRONTO. Bladder cancer treatment is evolving rapidly and you need someone who is current on all the new developments, as well as available on short notice. I once had doubts about an internist I was seeing and I asked another doctor about him, voicing all my concerns.. His response?
"you have answered your own question." The same goes for you...if something doesn't seem right, get out.

If you let us know your geographic location, someone on the list will have some recommendations of really competent urologists for you.

Good luck!!

Sara Anne

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