In my opinion, you definitely need to get him to a place where there are physicians who are experts in bladder cancer, and Southern Oregon is NOT the place (I used to live there.)
The closest place is, indeed, Portland. I would second Pat's nomination of OHSU for one. Second, my urologist, Dr. Daniel Janoff...having trained with Sia Daneshmand....is also quite knowledgable in this area. He is with Urologic Consultants in Portland, affiliated with Providence Hospital.
Either of these would be good choices, and are about as close to your home as could be.
Best of luck to you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 9 months ago - 8 years 9 months ago#34497by Patricia
This is a toughie..there are no recommended NCI designated centers in southern Oregon. Best bet is Portland at OHSU
and Dr. Amling
Or San Francisco at UCSF and Dr. Peter Carroll
But firstly you must get the rest of that tumor out. Your husband needs a second TURB pretty quickly. Its standard protocol to have a repeat TURB within 2 to 6 weeks after the first even when they think they have it all.
I would call the hospital where your husband had the surgery and ask pathology for the report. Its yours..you only need sign for it.
Where are you in Southern Oregon? My brother lives there in Medford.
Did they say that it was CIS? That's where it is flat on the surface but usually reddish (if visible at all). If that is it, then BCG (that's the TB vaccine stuff) works extremely well for CIS.
The concerning part is that you said it has spread to the urethra and prostate. I'm not sure how they would treat that with BCG. Typically, if it has already spread to the prostate, it is time for the bladder and prostate and urethra to be removed.
You mentioned glands....Perhaps you mean it has not spread to any lymph nodes? How did they check that?
You are doing the right thing going for the 2nd opinion. That should be with a top doc at a major bladder cancer center.
Patricia will probably jump in and suggest some as she does extensive research on the docs (in addition to the disease and treatments).
My husband was diagnosed with bladder cancer. I haven't learned all the terminology yet, but we were told that it massively covers the bladder, does not penetrate into the muscle, and involves both the urethra and prostrate, but not any glands.
He was scraped but not everything could be gotten.
Now treatments of introducing topical tuberculosis bacteria have been suggested, and if these fail to show good response, a bladder removal has been suggested.
My husband is 81 and in good health physically and mentally other than the cancer.
I don't think at that age we have a lot of time to find the proper treatment, he needs to be strong for them.
So I am looking for a second opinion in Southern Oregon if possible.