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second opinion in Southern Oregon needed

8 years 8 months ago #34623 by clueless
Ok, I am not fluent in the language you speak! :)

Orchiectomy I understand - I once had a monorchid dog and ectomy is always the same.

I looked up refractory and came up with resistant to cure...

But I gather that you may think he already had the BCG - he has not. He isn't getting anything done now until we have a second opinion, I have put a stop to it.. I think the straight road stops here and we have to choose which fork to follow. So first we need to know where the second fork leads...so the appt in Portland.

I don't think he would survive a BCG infection, since any antibiotics so far have caused him serious trouble and weakened him a lot. Give him an acute infection and two antibiotics.... scares the heck out of me.
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8 years 8 months ago #34622 by Patricia
WEll if the uro has taken at least 2 cultures and determined epididymitis then he needs to be on very certain drugs..see article
http://www.rxlist.com/theracys-drug.htm
go to the left of the page and hit side effects
Some male genitourinary tract infections (orchitis/epididymitis) have been refractory to multiple drug antimycobacterial therapy and required orchiectomy.

Treatment ofAdverse Reactions
If a patient develops persistent fever or experiences an acute febrile illness consistent with BCG infection, BCG instillations should be permanently discontinued, the patient immediately evaluated and treated for BCG infection and an infectious disease consultation sought. (See WARNINGS and PRECAUTIONS.) Treatment with two or more antimycobacterial agents should be initiated promptly while diagnostic evaluation, including cultures, is conducted. Negative cultures do not necessarily rule out infection. TheraCys is sensitive to the most commonly used antimycobacterial agents (isoniazid, rifampin and ethambutol). TheraCys is not sensitive to pyrazinamide. (14)
So he does need an infectious disease doctor. And good luck getting in at Portland.....Pat
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8 years 8 months ago #34621 by mmc
The ability to treat the prostate with BCG while treating the bladder due the way they did the scraping is new to me. I suggest checking that with the 2nd opinion doctor as soon as you can.

Also, if it has spread to the prostate, that is staged as T4a. See this link for staging information. http://www.cancerhelp.org.uk/type/bladder-cancer/treatment/bladder-cancer-stage-and-grade

Stage T4a is generally, but again check with the 2nd opinion specialist, treated differently from T0 or T1 (non-muscle invasive).

It's not a big deal but just to clarify: BCG treatments use the tuberculosis vaccine but it's not TB treatment the way it is used for bladder cancer.

You sure have LOTS going on! Hope you are able to get him in for the 2nd opinion quickly.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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8 years 8 months ago #34620 by sara.anne
"So, today's task is to get an appt. in Portland for George for the second opinion"

WOW....I think so!! BCG in the prostate? Comment anyone?

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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8 years 8 months ago #34617 by clueless
Ok, so here is a report, I've been washed away in a lot of considerations and hospital visits and emotions and trying to keep up with business...

So we got the scan done - and there is no indication of the cancer having moved beyond the areas we already knew about. So that is good. :)

When at the hospital for the scan, we went to "Information" and they had no idea if and where there was a pathology dept or lab and suggested we look in the other buildings.

Then we went to "admissions" where I remembered the lady being really nice and asked. They were not on her phone list, but there were several places labelled "lab". She called around and located them and sent us off - someone was holding the door at the lab open for us. The lab is in the back of the public phone room, behind an unmarked, locked door.

A lady was holding the door open and allowed us to step inside and then stop there. I asked her if we could please have the slides sent to Hopkins for a second opinion. She said that was never done. The conversation went round and a man came out of an open door and said to her: "we'll send them, get the address" and disappeared again.

She then got the address, all the while explaining how the records belonged to the doctor and not the patient etc. I didn't get into an argument, I wanted the second opinion and not a shouting match. I suppose her boss explained it to her later anyway.

I don't suppose anyone ever asked for this before - probably because no one could find the lab!

The day after next (sunday) George complained about pain and swelling in one of his testicles and upward. Worried about infection, he started the cipro. We had a monday dr. appt. anyway. That evening he had a temper tantrum, which I just ignored. It is very out of character for him. The next morning he says: What was that last night? I was about to explode with anger. Can you look up side effects of cipro?" I did and it's a conceivable side effect. Also, after starting cipro his appetite went away again.

Monday at the docs - he was weighed and lost 10 pounds. Doc took him off the cipro (isn't it bad to start and stop all these antibiotics?) and prescribed Sulfa, but said to postpone taking it a couple days and get George eating.

He said the pain was from epididymitis.


The doc wants to start the Tuberculosis treatments asap.He says it will get into the prostrate because of the way he scraped.

So, today's task is to get an appt. in Portland for George for the second opinion.
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8 years 8 months ago #34554 by Patricia
The CBC is a complete blood count...so until you see the values don't give him any extra potassium, calcium or iron.
http://www.labtestsonline.org/understanding/analytes/cbc/test.html
by the way those results are yours. Ask them to be sent or faxed to you.
pat
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