Forum

× click the New Topic button to post

2nd opinion

5 years 5 months ago #46708 by 4Phil
Hello Islander1der,
I realize your post to the bladder support website is from 2 years ago, but I am searching for people like yourself who has had to deal with this disease. I hope you are doing well. Can you share with us your experience? A little history - my husband (age 67) is otherwise very healthy, altho he had left kidney removed in 2011 due to transitional cell carcinoma. In February 2013 CIS of the bladder was discovered. He has had 20 BCG washes since Feb 2013 and his last 18 biopsies (since Feb 2014 this year) have all been negative! Regardless, the Cleveland Clinic urology oncologists tell him he must have the bladder removed because the cancer will come back. It is very hard to remove a bladder that has proven to not have any active cancer for the past 5 months. We feel my husband is at risk but can't help but wonder if CIS can be continually surveyed and treated to avoid bladder removal and the change of life it creates, in spite of what the surgeon is telling us. Whatever you may be able to share, we thank you. Laurie & Phil 8/5/2014

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

8 years 2 months ago #40122 by mmc
Best of luck to you on the treatments. Glad to hear you got the 2nd opinion. It usually helps with comfort level on the path forward. BCG has a great track record for treating CIS.

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...

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

8 years 2 months ago #40096 by CatherineH
Wishing you the best with your treatments and hope they kick that BC to the curb! Also glad that you are feeling more comfortable with the process... that means a lot when your life has been turned upside down like this. Keep us posted how you're doing!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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

8 years 2 months ago #40095 by sara.anne
Glad that you got so many of your questions answered....It is really difficult when all of this is so new. I know it was for me. Dr. Lamm, sort of the "BCG Godfather," reports that even at 1/10 the initial dose, BCG can still be effective.

You will do well!!!

Sara Anne

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

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

8 years 2 months ago #40094 by inland1der
I had my 2nd opinion consultation this week with Unhiversity of California Irvine specialists, and it appears that the BCG therapy is the most common one used when the cancer is in situ and hasn't invaded other areas. A couple of things came up that I hadn't really thought about. One being that since I had my left kidney removed last january, my bladder is somewhat smaller than normal, and it will somewhat lessen the amount of medicine I will be given. It wasn't something that will be an issue. Also, with the 1 kidney, the percentage of success is lessened somewhat but not dramatically. I was also relieved of a lot of fears of the safety of this virus that is introduced. While safety and sanitary proceedures need to be adhered to during treatment, my fears of infecting myself or my wife are very remote. I will see my uro next Thurs. and we will set treatment dates. I am a lot more comfortable going into this now. I thank everyone for their comments, and will post after treatment begins. :unsure:

I have really gained some insight into this disease and appreciate the support all who who have responded to my queries have given. Thank you

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 1351 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 1 Latest User: Annieapple
Yesterday Total Opened: 0 Yesterday Total Answered: 1
Total Posts: 53217 Total Subjects: 6943 Total Users: 8565
Powered by Kunena Forum