Forum

× Welcome click the New Topic button to post

recurrence of superficial tcc

4 years 1 month ago #47356 by Whatnext
Thank you Nicke. I will calculate using the data, and appreciate your post!
Best wishes for continued good health!

Patti

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

4 years 1 month ago #47355 by Nicke
The European Organisation for Research and Treatment of Cancer (EORTC) has made a calculator for the risk of recurrence or progression of superficial tcc.

http://www.eortc.be/tools/bladdercalculator/

If you put in data for low grade bladder cancer in the calculator you will find that the risk for recurrence is high or very high but the risk for progression is very low, regardless of other circumstances.

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb
The following user(s) said Thank You: Whatnext

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

4 years 1 month ago #47351 by Whatnext
Thank You Sara Anne, I agree that this "low grade" is very pesty. I have not found much data either (May be from lack of searching), but what are the chances of this progressing? If anyone has had experiences with multiple recurrences and then a more invasive diagnosis I would like to hear their thoughts and how they managed for treatment.
I read an article on Selenium, and am going to try to research it a bit more. ? Alter my ph a bit by eating more acidic foods? And pray!

Thanks All, feel better knowing I can reach out to you. Thank you :)

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

4 years 1 month ago #47350 by sara.anne
You are a classic example of why "low grade" isn't quite as good news as some think. You just have to keep up on the close checkups...nerve wracking as they are!

Not every uro gives mitomycin after a TURB....

Hope the discomfort is over soon.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Whatnext

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

4 years 1 month ago #47347 by Whatnext
Hello, thanks for responding. My diagnosis of papillary urothelial cancer is low grade (Former WHO 1 of 3).
I have sought out a second opinion and am in Boston, Ma. Also consulted with Dana Farber, so I feel fortunate in many ways.
My biggest concern, and the reason for the second opinion was that many of my biopsies did not contain any muscle tissue. I have spent many years working as a health care provider, so not getting muscle tissue for biopsy was unsettling to me. If it hadn't reoccurred so frequently maybe it wouldn't have worried me so.
In any case, the last biopsy also was good news in that there was no lamina propria invasion, but again, no muscular is propria present!

The reason for the stent is because the cells had spread to my left ureter. Placing the stent was surprising to me, and the discomfort has made this post-op course much worse than any others! ( 7th procedure).
My main concern is the lack of muscle tissue, and the frequency of recurrence, despite 2 rounds of BCG.
It's difficult too, to explain to the family...trying to be positive as it's considered low grade, but it's hard to be optimistic when you are in pain and frightened!
Luckily enough, my labs and CT scans are looking good! Not sure why I did not get the Mitomycin, and can only guess the surgeon held off because of the stent? Maybe too irritating?
Going back next week to either have it removed, replaced or taken out.
Thanks for allowing me to post and I appreciate any suggestions.
This was the worst post-op, and as thankful as I am that it's not invaded, it has been a long painful 8 weeks!

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

4 years 1 month ago #47334 by Flamenco.
Firstly, welcome to the site, and sorry that you are having problems with recurrences.What stage and grade have your pathology results shown? Have you had any second opinions on your path results and treatment? Have you been told why has the stent been placed? Without more information it is difficult to advise. Perhaps if you let us know where you are, and where you are being treated, some other member may have recommendations of where to get a second opinión.Please let us know, we will try to help and advise as much as we can - you are not alone .
Diane
The following user(s) said Thank You: Whatnext

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: Cynthiaeddiek

Users

Total Online: 1 User and 392 Guests 
Jack R's AvatarJack R

Legend: Site Administrator Global Moderator Moderator Banned User Guest

Statistics

Total Messages: 50829 Total Sections: 1 Today Open: 0 Today Total Answer: 0
Total Subjects: 6513 Total Categories: 11 Yesterday Open: 3 Yesterday Total Answer: 9
Total Users: 7771 Latest User: Rev
Powered by Kunena Forum