Forum

× click the New Topic button to post

SW Florida and need some advise

10 years 5 months ago #29383 by Nix
I live in the Tampa area and recently changed doctors and went to Moffitt Cancer Center. I was dx'd three yrs ago and proceeded on the BCG path. I was very pleased with my local Uro, because he treated the cancer aggressively. That being said, I had some difficulty with all the BCG (after 24 washes)
My doctor at Moffitt is Dr Wade Sexton. Since it is a teaching hospital a team reviews all your records and presents the results to you. I liked the doctors so well, I am now a patient of theirs.
I strongly agree with the others about a second opinion. Through each phase of my treatment I went for second opinions. To date I have had 4 opinions, and if need be I would go for a 5th. As stated, it is very important to learn as much as you can about BC and to be your best advocate for your treatment.
I know it seems over whelming right now, but once you have a plan in place things will settle down, and you will see a light at the end of the tunnel
Enjoy your holidays with your family.

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

Please Log in or Create an account to join the conversation.

10 years 5 months ago - 10 years 5 months ago #29382 by Patricia
The Moffit Center is near you ..here's the page to the uro's..check them out and see if anyone appeals to you. My experience with them is they do more neobladders and specialize more in men. As a female..honestly we do better with an Indiana Pouch.
http://www.moffitt.org/Site.aspx?spid=BF72D4455066450A96F788D72D1E2187&type=PhysSearchByProg&progname=Genitourinary+Oncology&SearchType=Physician
You might try the Cleveland Clinic Weston...two very good uro's there in the top docs in the US
.http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=3657

http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=13592
Good luck..don't panic.....have a merry christmas
Pat

Please Log in or Create an account to join the conversation.

10 years 5 months ago - 10 years 5 months ago #29381 by Humpy
I live in Michigan, so I can't tell you where to go, but I would seek a second opinion.
I had high grade, poorly differenciated, grade 4, 70% glandular, non invasive cancer. My local Uro wanted to go the BCG route. I chose to go to U of M, Ann Arbor, Michigan for a second opinion. The only way they would guarantee life, was to have a Neobladder. The said my type of cancer was not even receptive to BCG. My father chose The BCG route with the same local Uro, and we burried him two years later. What I learned from his passing, saved my life. That is the ultimate gift!!!

So try to enjoy the holidays, surround yourself with your loved ones. There is nothing you can do, or change things in a week. Get a second opinion, at a Univerisity Hospital or equivalent. Bladder cancer does not mean, the end of life. Even if you got a Neobladder, it would all be behind you, and feeling great after 6 months like me.

Best of luck, God Bless, and Merry Christmas, Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

Please Log in or Create an account to join the conversation.

10 years 5 months ago #29380 by Cynthia
This is from a lady who is having a scare at the holidays and we know that as hard as they are at any time they are worse somehow now.

I would suggest Moffitt as being close but I do not know of a Doctor who I would suggest. Could any of you have a suggest for one or another facility?

I have already told her that she is doing the right thing and survival is high for people that stay on top of it and seek the best experts. I am sure you all will have some words of encouragement as I think they would help a great deal right now.


I'm a 40 yr old Mom of 2 and just found out a couple of days ago (Merry Christmas!)that my FISH test came back positive at my first 3mo checkup after BCG treatments. A year ago I was diagnosed w/ non-invasive bladder cancer, however my tumors were highly aggressive (Scored 4 out of 4). I live in SW Florida and was wondering if you have any suggestions on where to go for a 2nd opinion. I have two little ones and I want to be around for a VERY LONG time. I remain positive and strong, but right now my heart is just breaking...

Thank you for any advice you may have.

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

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 2047 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: Elainej
Yesterday Total Opened: 1 Yesterday Total Answered: 3
Total Posts: 53704 Total Subjects: 7032 Total Users: 8732