New here with questions and comments

11 years 4 months ago #43498 by Iowa Mike
Replied by Iowa Mike on topic New here with questions and comments
Wow, I didn't expect so many comments so soon. Thanks to everyone. I guess I could put up with the doctor easier if I knew he was a good one. But how does anyone know? Is there a list somewhere of the top rated BC doctors in my area? I tried googling it but it just comes up with a list which my doctor is on. Lets call him Dr. Steve.
These doctors run patients through like cattle and maybe thats why they are so quick with people. But I'm sure you are the same. You want the guy or gal to sit down for 5 minutes and say this is whats going on. So not sure what I'm going to do at this point. I go for my 5th mitrocyln treatment on Friday. And at $250 copay for each treatment that it rough for a retired guy. I thought things were pretty much under control until this last one and he said there were 5 small ones. The year before I was clean.

And Mike the picture of me, my little girl did it with photoshop. :)

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11 years 4 months ago - 11 years 4 months ago #43495 by mmc
Replied by mmc on topic New here with questions and comments
Mike,

Glad you posted. Given that you are low grade, that is a good thing. It really sounds like you ought to see someone else though (if for no other reason than to confirm).

Your doc sounds a bit cavalier but it depends on your relationship. I don't think I'd be OK with it.

I went for 2nd and 3rd opinion doctors both at MD Anderson (in Houston) and University of Colorado Hospital (in Denver) when I had my first recurrence. Mine was high grade though.

Given enough time, low grade can become invasive and then it is a problem. While it is just on the innermost layer, it is not so bad.

Trust your gut. It's already telling you that you should get a 2nd opinion at this point.

Let us know.

Mike

P.S. Nice sky in your picture! :)

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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11 years 4 months ago #43494 by sara.anne
Replied by sara.anne on topic New here with questions and comments
Woops...Dr. O'Donnell

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

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11 years 4 months ago #43493 by sara.anne
Replied by sara.anne on topic New here with questions and comments
Welcome, Mike! I was composing a message to you about the University of Iowa and Dr. Donnelly, but Cynthia beat me to it! Having lived in Iowa City, I know that it is not right "next door" to Des Moines, but you are closer to a real center of bladder cancer expertise than a lot of people.

As you have gathered from what you have read here, not all urologists are great at treating bladder cancer!!

Good Luck to you

Sara Anne

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

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11 years 4 months ago #43492 by Cynthia
Replied by Cynthia on topic New here with questions and comments
Mike, Sorry you have to be here but welcome. As I was reading your post I thought to myself it is too bad he can't just print out this post and give it to his Urologist. I wonder if it would make a difference in the way he interacts with patients? Yes you are lucky it is low grade but that does not mean it does not impact your life and leave you with questions and concerns that are real and deserve to be addressed.

It would be a drive for you but one of the best in non invasive blc is in Iowa City. Dr. Michael O'Donnell has done a lot of research into different agents used to treat non invasive blc.

www.medicine.uiowa.edu/dept_primary.aspx?appointment=urology

I know others will chime in and maybe they know of someone else that they could recommend. If you have questions please post them we may not know all of the answers but we are pretty good at know where to find the answers.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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11 years 4 months ago #43491 by Iowa Mike
New here with questions and comments was created by Iowa Mike
Hello all, I just found this forum and have been reading posts for a few days. In 2006 after seeing blood in my urine I was diagnosed with superficial BC. I have done my checkups and it has come back evey two years. This time I was told there was 5 small ones so I have started mitomicyn after they were removed. Here is my dilema.
I am in the Des Moines area going to a large clinic. My doctor has 30 years experience but has no time to talk to me about my concerns. Maybe it's because he is so busy but if he is a good doctor I hate to move to another. The first time he told me I had cancer he said the nurse will schedule a appoitment for surgery and walked out. Hardly any communication at all and it drives me crazy. This last time he said there was five spots I said "damn that dont seem right" he said do you feel cheated? did you want ten? When it comes to cancer I want to know whats going on with my body. Most the info I have got was off the net. So at this point I'm not sure what to do. If anyone knows of a good BC doctor in the Des Moines area I really might consider changing. Thanks for listening.

ps: I just turned 58 and have had this for about 6 years. He says it's low grade and not a big deal but it is to me.

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