Second recurrence of tumor with cystitis cystica

9 months 4 weeks ago #59496 by Jack R
Doglover

Cystitis cystica can be a minor or major issue. Continued irritation of the bladder has been explained to me as the most common cause. Location and size of the growth are important. It is NOT cancer. Mine was dealt with by removal of the (large) growth and a course of antibiotics.

As always, only you and your care team know your situation.
The following link provides a good overview, but focuses on it as a major issue.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5846953/

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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

9 months 4 weeks ago #59493 by sara.anne
Replied by sara.anne on topic Second recurrence of tumor with cystitis cystica
Nothing for the cystitis. It was not considered "clinically significant" but rather just came along with the cancer. Sort of like when you cut your finger and the area around the cut is irritated. Not something to worry about.

It doesn't matter when the second occurrence happened. Most patients do not have it come back. Probably no special treatment is warranted now but if it comes back again a urologist might recommend BCG or another treatment.

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: doglover

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

9 months 4 weeks ago #59490 by doglover
Sara.anne,
Have you heard of them treating the cystitis with any drugs? Did yours just go away on it's own?
I take it that 6 months is considered early for a second recurrence. I have not had any treatments following surgery.

DX 10-19 First TURB Low grade, non invasive papillary urothelial carcinoma pTa. Recurrence 11-19 Second TURB DX Papillary Urothelial Neoplasm of Low Malignant Potential (PUNLMP)
Second recurrence discovered June 8, 2020 six months later.

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

9 months 4 weeks ago #59485 by sara.anne
Replied by sara.anne on topic Second recurrence of tumor with cystitis cystica
Sorry that your "friend" keeps returning. That is one of the dirty little secrets of low grade bladder cancer unfortunately.

Cystitis cystica is an inflammation/irritation of the bladder lining probably caused by the tumors themselves. I also had this on my original path report. It usually goes away by itself.

With your history of recurrences it might be a good idea to get a second opinion on treatment from a center that specializes in bladder cancer such as a medical school urology department or a place like MD Anderson, Johns-Hopkins, or Sloan Kettering. Be sure to keep up with those frequent exams!!

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: doglover

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

10 months 2 hours ago #59484 by doglover
Would appreciate any opinions or experience with multiple recurrences.
I received a TURBT for a low grade Ta TCC in October of 2018.
November of 2019 I was told I had a 1/2 cm tumor. (The first one was 1 1/2 cm) The Urologist said it was in the same general area, right lateral wall, and the office, or done in the OR. I chose OR. The diagnosis was small papillary neoplasm of low malignant potential (PUNLMP).
A week ago at the second three month checkup following the December surgery, I was told another small tumor was found. Approx. ½ centimeter. Urologist suggested it was similar to the last one, and did not appear to be muscle invasive.
I had the third TURBT done this week on Tuesday.
Following surgery she said I had 1 cm tumor and cystitis cystica. And wrote this note for me: Cystitis Cystica cystic mucosal inflammatory changes around the bladder tumor.
Doctors notes after surgery:
“Patient had one small 1 cm tumor as well as some satellite what appeared to be almost like cystic changes alongside on the bladder dome”
Has anyone had, or know what cystitis cystica is?? Is it another form of cancer?
Is a second recurrence within six months a very bad sign? Do frequent recurrances have a tendency to become high grade or muscle invasive?

DX 10-19 First TURB Low grade, non invasive papillary urothelial carcinoma pTa. Recurrence 11-19 Second TURB DX Papillary Urothelial Neoplasm of Low Malignant Potential (PUNLMP)
Second recurrence discovered June 8, 2020 six months later.

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

Moderators: Cynthiaeddieksara.anne