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The first 4 months part 1

12 years 2 months ago #7574 by Yosarian
BC Adventures in the Big Apple—and a mystery Re- resolved--- Part Trois

Greetings once again Patricia, Wendy, Rosie, Alice, Rosemary, and New2This and other Brothers and Sister in the alliance to beat BC .(or at the very minimum hold it back a while............)

Anyways, as always thanks for your kind responses, advice, links, knowledge, information and even opinions.

Now to THE CALL!

Sue from Dr. Herr’s office called tonight at around 6:30 with the answers to the questions she was going to ask Dr. Herr as well as some other information. She said she called at 6:30 PM because Doc H didn’t finish operating until after 6 and this was the first time he had a minute to speak with her!

She first apologized again for what happened at MSK and said she had started and investigation as to why something like that would happen (the 2 to 3 hour wait to see them) and she would get back to me. She also said they were working to improve ALL patient relation conditions at the hospital. (And Rosie, I agree just blaming it on the receptionist isn’t enough—it’s a systemic problem but I felt good that Sue seemed to be recognizing that too...maybe she was just blowing smoke up my ah derriere but she did seem sincere and on the patient’s side...at least she said what I thought was the right thing...but I do share your skepticism about making that blind elephant dance to quickly.)

Now as to the questions she was going to relay to the Good Doctor Herr....

#3 From last night) Why does he not recommend maintenance BCG ( or even some other regimen) and if he doesn’t because he does not feel it does any good would he recommend it if the patient wanted it? Does Dr. Herr feel maintenance BCG is harmful? I told her the Florida Uro I have recommends it and I thought many or most Uros, and Dr.’s did and I also mentioned Dr. Lamm’s studies and that I was anxious to do something to improve my odds...yada yada yada

A)She said she spoke with Herr and he did not usually recommend BCG maintenance because their studies had shown it not to be effective. She also said (a little different from last night but this was from Dr. H not what she thought Dr, H would say) that Dr. H didn’t think it was harmful but that his main concern was some of the secondary side effects some people suffer. Then she said (and to my amazement!) if I wanted it and my Florida Uro would administer it, it was okay with Dr. Herr. I would have to first double check with my Florida Uro and confirm he would do it, then call them to confirm and so they can adjust my records! Wow I was surprised –very reassuring!

Q 3 from last night) Any trials I should be considering?

A) No not for your condition (at least here at Sloan) since the BCG seemed to work so far and my cysto and urine cytology were negative.

Question 7 from last night) By the way did Dr. Herr use the “Blue Light” on me during my exam because I had read you needed to have some fluid injected into your bladder ahead of time for it to be effective and I didn’t?

A) She said she checked with Dr. Herr and she was wrong (way to go Wendy!) the light they used wasn’t the “Real” Blue Light I was probably referring too...The real one does need a bladder infusion an hour before use . The reason she and the nursing staff use the term blue light is they have a new scope called a “Noroband”?? (not sure of the spelling or even pronunciation) that has a switch for a greenish blue screen image and that’s what the nurses commonly call it. I may be very gullible but I believed her...of course I also believe in the Easter Bunny and Jack Frost ....

So WOW What bright folks illuminate these BC forum pages ..You were right all along Wendy about the “Blue Light” as so many of you were about all the rest. And Rosemary I’m glad you recalled “Dr. Fell” (also the name Hannibal Lecter used when he was in Rome hehehe)

Nite all and Danka schoen
Yosarian

P.S. Wendy much thanks for the link ...it was very informative and helpful.

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12 years 2 months ago #7571 by Rosie
Yosarian said: She apologized profusely saying that was not the standard of patient care they accepted and the receptionist was clearly wrong.

I don't know, It never makes me feel better nor more confidant in a company when a fellow employee or their organizational system is blamed by the representative person on the telephone. I just want my problem resolved, I don't want to hear excuses. What if Sue leaves, or is on vacation or off the day you go in? I personnaly need to feel confidant that the system is in place to accomodate my needs without having to depend on any one person. It should be competent team work.
Rosie
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12 years 2 months ago #7562 by New2This
Sounds as if things are going much better with Sue to smooth things.
About the BCG - my husband never had BCG before his cystectomy, but after the first cysto and tumor removal, his first urologist told us the same thing. No BCG yet, so as not to affect any future tests/cystos.
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12 years 2 months ago #7560 by Rosemary
Yosarian,

My impression of all this is that this is going to be a trade off situation, (should you choose to accept it)....evidently even Sue only likes your questions UP TO A CERTAIN POINT...

If you want this BIG GUN to treat you, it's going to be his way. You've been told that in so many words.

If you want it YOUR way, you are going to have to find another Uro.

Also, about the Oncovite comment, etc....you might have to read between the lines a little on that one.

The Freudian Slip about Dr. Fell was cute. I had forgotten the nursery rhyme about Dr. Fell...cute..

Best regards,
Rosemary




Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 2 months ago #7559 by wendy
Well, I sure hope you don't get fired as a patient if you want to stay with you current doctor! If necessary- we can delete anything that might upset them over there, eh?

Yosarian, here is a reference to maintenance, I started another thread on 'superficial, non-invasive blc':
http://blcforum.com/smf/index.php/topic,1122.0.html

You may use it or not, as you wish. It's from Europe but Lamm was in on the meta-analysis, and this is the study that made them adopt maintenance in Europe. Perhaps not all doctors are convinced but that's their prerogative. Not all patients are convinced either.

Don't use the info to argue, that's not gonna get you anywhere, use it to help yourself decide.

Best,
Wendy
PS about the blue light, I haven't heard of one that doesn't need an infusion first to make the bladder fluourescent, but I still have plenty to learn. Thanks!
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12 years 2 months ago #7555 by Yosarian
BC Adventures in the Big Apple—and a mystery solved--- Part Deux

Dear Patricia, Wendy, Rosie, Rosemary, and New2This and other Brothers and Sisters in the BC Club ..............

Once again I want to express my thanks for your kind words, helpful comments, advice, information, and thoughtful discussion.

Dr. Herr’s office did call about six tonight (8/15/07) and my wife and I got all of our questions out (if not answered) and even an apology!

I spoke with Sue who (I think) is either a PA or Nurse but seems to be Dr, Herrs right hand woman and is really very nice and treats me as I hope to be treated. Apparently she acts as a go between for patients and the Good Dr. Fell—opps Herr! She answers the questions she knows the answers to and says she will ask Dr. Herr the others and get back to me. She was in the room observing when I was scoped but did not speak.

I told her we had flown a round trip of over 2300 miles to see Dr. Herr and had hoped to see him for more than a cost of roughly 1150 miles per minute of face time ---(well not exactly face time since I was on my back ..but you get the not so pretty picture). Anyway I told her we had wanted to ask Dr. Herr some questions after the procedure but new that was a remote possibility and had asked to see her (Sue, not Herr! her who is a he) and was told my the receptionist it would be a 2 or 3 hour wait and that we had to go. She apologized profusely saying that was not the standard of patient care they accepted and the receptionist was clearly wrong and she would check it out . There was a lot of Yada Yada but I did feel she was sincere. I also told her that Dr. Herr had a curmudgeons reputation amongst patients and on the net and she did say he was very busy and they were trying to see all the patients who really wanted to see him and still have him be responsive to concerns such as mine. And she was apologetic once again and said next time to march to the office and see her (not Herr!) but that she could even arrange for him to call me!

AND we solved “The Mystery of the Blue Light” Youser Youser Youser!

Here are the 7 questions I asked and a summary of the answers.....

1) Q..When Dr. Herr said “It looks Good” at the end of my cysto what exactly did he mean...?
A) He saw no reoccurrence and no residual tumor or cancer! (YES!)

2) Are the results of the urine test back yet and what did they test for?

A) Yes they are back and the Urine Cytology mainly tests for the presence of cancer cells in the urine and you had a “Negative Cytology” –no presence of cancer cells in the urine! (Yes! Yes !! Yes!!!!)

3) Q) Why does he not recommend maintenance BCG ( or even some other regimen) and if he doesn’t because he does not feel it does any good would he recommend it if the patient wanted it? Does Dr. Herr feel maintenance BCG is harmful? I told her the Florida Uro I have recommends it and I thought many or most Uros, and Dr.’s did and I also mentioned Dr. Lamm’s studies and that I was anxious to do something to improve my odds...yada yada yada
Note –Here is where is got a little dicey........

A) She told me she would ask him but she was fairly certain Dr. Herr did not recommend BCG maintenance and especially for patients like me whose urine cytology and scope had been so good. She basically said Dr. Herr had done many studies and they showed no advantage to maintenance BCG. When I asked what about if a patient wanted it she (ominously) said then that Dr. Herr would probably want his patients to believe in him and what he recommended and to find someone else if they didn’t. (Ouch!) She then said she would ask him but that she thought also the BCG might screw up the next cysto in the next three months as it would “still be working in there” and might influence the test. I wasn’t exactly clear what she said except it might interfere with the next scheduled cysto. But she said she would ask him. (I hope she doesn’t tell him all this and I get fired as a patient!)

4) Q) What else can I do to help prevent a reoccurrence...any vitamins, herbs, minerals, diets etc.

A) Dr. Herr doesn’t recommend and special diets, or foods or vitamins like oncovite which might even hurt your health ..Just drink plenty of h2o and exercise and carry on normal healthy living.

5) Q) Any trials I should be considering?

A) Probably not with your last test results but she will check with Dr. Herr.
Most trials are for patients that cannot tolerate BCG.


6) Q) Can I get the written results of my Cystoscope and Urine Cytology sent to me?

A) Yes she will arrange it although it won’t be for a few days as Dr. Herrs notes aren’t available yet. (She would have faxed it but we dont have one.)

7) Q) By the way did Dr. Herr use the “Blue Light” on me during my exam because I had read you needed to have some fluid injected into your bladder ahead of time for it to be effective and I didn’t?

A) Yes that was a Blue light we use , it’s the kind that doesn’t need the infusion but I know about the one you are speaking of and that is not the kind we have.
BOOM! Mystery solved!

That’s all folks.....On the whole not all the answers I necessarily wanted but at least answers and promises of more answers and an apology and a promise to work to correct the problem so I would give it a B or so.

I will wait to hear his answer about BCG and Me (Sounds like a movie title) but am still lured my Dr. Lamms Test results. Damn was I ignorant B4 BC....I thought these things were treated as science or math and 2 plus 2 always equaled 4 ....but there are no easy answers, sometimes no answers, just more questions. Speaking of questions, here’s one, does anyone have web address of any other BGC maintenance studies for Guys like moi?

Well time to go nite nite –thanks for lending me your ears....

Yosarian
P.S. Rest in Peace Phil “Scooter” Rizzuto –the world is a lesser place.
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