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Dad Daignosed with BC

11 years 2 weeks ago #24649 by mmc
I agree with Pat. Ask how many neobladders he's done. You want a surgeon that does these routinely. Cancer centers/teaching hospitals are preferred as they do them all the time.

I responded to your post on webcafe with some of my experiences and also sent you email. Feel free to contact me privately with any questions.


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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11 years 2 weeks ago #24648 by Engigheve
I asked and she said she that all of their urologist were qualified and then I asked how many they have performed and she said that my dad would have to ask when he came back for his appt. lol, so didn't get anywhere, she was nice, but didn't get me any information!!!

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11 years 2 weeks ago #24647 by Patricia
thanks for the link....so the local advocate said he was qualified...hmmmm...ask how many neobladders he's done in his lifetime? That would be an arguement for an appeal as i suspect not many.
Pat

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11 years 2 weeks ago #24646 by Engigheve
http://www.ucurology.net/physicians/bell.html

There is the link to Dr. Bell. I did talk to a patient advocate earlier today and she pretty much said that their Uroligist are qualified and that would be the only option my dad would have... so yeah she didn't help. She also said that my dad really needs to meet with his doctor to discuss everything (if it was only that easy).

Thanks for the links, I am going to look them up now!

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11 years 2 weeks ago #24641 by Patricia
Hi J...so glad you came over to this site.
I have searched and searched and cannot come up with a Dr. Bell at U. of Cinti Hospital or the Barrett Center??????? Do you have a first name? Like i told you uro's in cinti that do neobladders are few and far between. I do think you have some recourse if an available surgeon that specializes in this surgery is not available at the VA that they have to allow you to go to someone who does do it on a regular basis. I'm not familiar with the redtape involved however. Maybe someone here will know the answer to that hopefully.
Is there a Veterans Affairs council? Your senator?...Maybe the Patient Advocacy Network could offer some help?

http://www.patientadvocate.org/
Another thought since your father is actually in Indiana and IU Medical is one of the top hospitals for urological cancers and is only about l l/2 hrs away
There is Dr. Birhle
http://www.clarian.org/portal/patients/findadoctor?paf_gear_id=300006&paf_dm=full&paf_gm=content&task_name=displayBio&contactId=474
And Dr. koch...(Inventor of the Koch pouch)
http://www.clarian.org/portal/patients?paf_gear_id=300006&paf_dm=full&paf_gm=content&task_name=displayBio&contactId=109421
Pat

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11 years 2 weeks ago #24640 by sara.anne
JK, our thoughts are with you and your dad. A diagnosis like this is devastating, and we do not think clearly at first. I was diagnosed with CIS, no complications, and I went to pieces. I can imagine how I would have reacted to your dad's diagnosis. It takes a while for reality/sanity to set in.

You are wonderful to be able to keep on top of this and help to head him in the right direction. Perhaps one of the guys on this list might be willing to talk to him? (GUYS???) This list has been such a help to me...people who have been there/done that. Life does go on.

Sara Anne

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