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Choosing the right Doc & Hospital
Hi folks, I’m new to the site (and forums) but have spent the last couple of days reading your posts and discussions. My husband, Ron, now 65, was originally diagnosed with superficial BLC Fall of 2004. Turp and 3 years of BCG kept it at bay until now and he has an invasive reoccurance. We are in that stage now where we are trying to learn all that we can about choosing the right doctor and hospital for surgery and reconstruction options. We have not talked to anyone yet about surgery except the urologist that says it is indicated. We live in the Southeast. My question to the members is: Has anyone used a doctor in Alabama or Georgia? And is it okay to talk about specific treatment centers here? Thanks, bunches, for your help.
I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
9/08 Invasive BLC w/distant mets
11/08 – 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression – start ITP chemo
10/09 My darling Ron passed away11 Replies-
just to claify…i was T2a but only Grade 2…..if i had been grade 3 chemo would have been suggested. I actually had 5 opinions on it….including Dr. Stein at USC/Norris, Johns Hopkins, The Cleveland Clinic, Indiana U, and MSK.
Pat -
There has been research done and many specialists are now using chemo prior to Radical Cystectomy. I know many of the survivors here have gone that route when it has been recommended. I was also T2 G3 and that was what was recommended to me by one of the teams I had a second opinion from. I chose to try a clinical trial to try to preserve the bladder and had chemo and radiation as part of that prior to my Radical Cystectomy due to reoccurrence.
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 SocietyNo i did not have preventive chemo. On the second turb all margins and cancer was removed by Dr. Herr. I only had one tumor..actually quite small but lethal. All my scans were clean and I proceeded with the cystectomy 2 months later and removal of 36 lymph nodes which were also all clean so i escaped the chemo route. If the pathology on the second TURB shows more progression then yes chemo would be indicated..or if the CT scan showed up any involved nodes.
Pat
2nd Turbt tomorrow and ct scan. So, did you have preventative chemo prior to surgery?
I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
9/08 Invasive BLC w/distant mets
11/08 – 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression – start ITP chemo
10/09 My darling Ron passed awaykitty…that was the exact pathology i had….but i had a second TURB at Memorial Sloan in NYC..they rarely make a mistake in staging. What its saying is its invasive into the superficial layer of muscle and that node or distant mets cannot be determined. Has he had a CT scan, a bone scan, chest x-ray, blood work?
I’m just surprised he didn’t suggest a second TURB?
Pat
Sorry I didn’t answer all of your questions. Grade 2/3, musle invasive, 2nd Turbt tomorrow to cauterize bleeding and look/scrape
I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
9/08 Invasive BLC w/distant mets
11/08 – 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression – start ITP chemo
10/09 My darling Ron passed away
it was classified as pT2aNXMX
I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
9/08 Invasive BLC w/distant mets
11/08 – 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression – start ITP chemo
10/09 My darling Ron passed awayKittie lee….you said the tumor had progressed to invasive…..but invasive to what? What did the pathology report say? Is it muscle invasive? high grade? Did Dr. Chang suggest a second TURB?
Pat
We’re here at Vanderbilt today and have met with Dr. Chang. He is quite the proponent for chemotherapy before the cystectomy due to the fact that tumors are often understaged for a variety of reasons. May I ask the membership about their experience/opinion with preventative chemotherapy?
I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
9/08 Invasive BLC w/distant mets
11/08 – 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression – start ITP chemo
10/09 My darling Ron passed away
Patricia,
Thank you for responding to my question. I have contacted Vanderbilt and I am very impressed. We have an appointment for the last week of this month with Dr. Chang. Many thanks for the information. We are still looking to interview other Docs in order to feel comfortable after talking with 2 or 3. Has anyone reading this reply dealt with UAB or Emory and have something to share (positive or not)?
I am a caregiver to my wonderful husband, Ron
10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
9/08 Invasive BLC w/distant mets
11/08 – 3/09 Gemzar/Cisplatin chemo regimen
4/09 Radiation to bone mets
6/09 lung and liver met progression – start ITP chemo
10/09 My darling Ron passed awayKittylee….The best places in the southeast are Johns Hopkins and Dr. Mark Schoenberg who is a top bladder cancer surgeon http://urology.jhu.edu/markschoenberg/index.php …….Vanderbilt Ingram Cancer Center..Dr. Chang http://www.vicc.org/dd/display.php?id=3907
I haven’t heard much about Alabama or Georgia in regard to bladder cancer.
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