Forum

× Welcome click the New Topic button to post

Bladder tumor

2 years 1 month ago #52231 by Rob123
I share your frustration and fear. I was diagnosed last year in April at 57 years old with non invasive hi grade bladder cancer by a local uro my wife had been going to for the last 25 years. They took a biopsy to confirm and recommended a follow up surgery. I opted for a 2nd opinion and was lucky enough to get to see a great surgeon (Dr Bernard Bochner) in New York at memorial Sloan Kettering. He did a. 2nd thorough 2nd biopsy in mid April 6 weeks later I did 6 weeks of bag treatments. The effects were not bad the first time around. Next step was a scope very 3 months beginning in September , December (dr noticed small irritated spot) and then back in March. At that last scope he decided for another biopsy which came back positive but very superficial. I continued with regular scopes and discussed and just started 3year bcg maintenance. Once a week for 3 weeks 4 times a year for year one, 3 weeks 4 times year 2, then 3 weeks 2 times year 3. I look at it as a blessing to have options that allow me a normal way of life. The fear is gone but frustration comes and goes. No pity party. To get to a point you made about treatments..... I found as long as you have a local urologist that you're comfortable with and a short drive do it. I live in Connecticut and go for treatments 5 mins from home. Back and forth to New York would not change the outcome. Following all recommended protocols leaves us in a very fortunate position. As time goes on you will come to terms with it. My family has been a tremendous help. Stay strong and best of luck.
The following user(s) said Thank You: dtat60

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

2 years 1 month ago - 2 years 1 month ago #52219 by Alan
David,

AS I am not a doctor and everyone's situation is different, I defer to your gut instinct. Dr. Svatek has a great reputation. I think the key question is the path report and whether there were sufficient "margins" to be sure of what your Austin doc is looking at. IF he is certain his sample and report are correct get that BCG going after that secomd TURB confirming your DX (I see you have that scheduled). While my tumor was small my URO and path didn't like the "margins" hence the second TURB. Follow your intuition and gut. Your Austin URO sounds like a diligent one. I asked myself similar questions-should I go the MD Anderson-which I didn't do. Eventually, we all have to put our trust and faith in a caregiver and move on with life.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
The following user(s) said Thank You: dtat60

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

2 years 1 month ago #52218 by dtat60
Alan - I contacted Dr. Svatek's office and asked about getting a second opinion. They said sure but probably would have to see his associate since Dr. Svatek is very busy doing surgeries but that he supervised all of his associates. I assume this is a non-issue? What do you think? I actually was planning doing this after my next TUR (sched. Dec. 8) and Path report. Before the proposed BCG.

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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

2 years 1 month ago #52191 by dtat60
Thanks so much, Lillian! I will call UHC and see what they say about a second opinion. I was hoping for even better news but I am very thankful that at this point it appears to be superficial.

This whole thing just came from nowhere. I feel so good and have made a concerted effect to stay as healthy as possible. Boom! You never know what's coming to get ya!

I can't tell everyone how much I appreciate your feedback. Without this forum and the knowledge that everyone shares (based on personal experience) I would really be mostly in the dark about so much. It allows me to learn, plan, and prepare for my future. Very thankful!

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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

2 years 1 month ago #52177 by Jack R
David,

I understand your concern about path reports. This is my own take on pathology reports.

If anything in the path report indicates anything other than an absence of cancer, based on sufficient sampling, I want to know how the (uncertain) findings will be addressed.

I am tired of my path reports always containing phrases such as:
"most consistent with"
"Is felt to indicate the possibility"
"does not appear to qualify as"
"is best considered as"
"could support an impression of"

I would like straight forward path reports. I do not expect to see them.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0
The following user(s) said Thank You: dani, dtat60

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

2 years 1 month ago #52176 by Alan
Any high grade sample no matter how small should be addressed as all high grade. I had the same question of my URO as a nurse friend with a specialty in bladder oncology told me that the antibiotics given for my first symptoms (hematuria) could cause a tumor that is low grade read as high. My URO responded that he personally read the path report and that it might have been read as grade 2 (I don't think they use that much anymore) but, ANY part reading above grade 1 is a call for BCG. So, you are getting good and safe advice. BCG is a great alternative to chemo!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
The following user(s) said Thank You: dtat60

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 attachements.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 385 Guests 

Statistics

Total Messages: 50877 Total Sections: 1 Today Open: 0 Today Total Answer: 0
Total Subjects: 6518 Total Categories: 11 Yesterday Open: 0 Yesterday Total Answer: 4
Total Users: 7783 Latest User: sarahwelson
Powered by Kunena Forum