Decided it was time to join in. Have some questions.

2 years 10 months ago #55464 by tmcbladder
I'm not exactly newly diagnosed. Nov. 2017 first diagnosed (1 high grade tumor) & had TURBT, followed by 2 rounds of BCG. June 13th, 2018 cystoscopy resulted in finding 4 new tumors. Had TURBT on June 15th. Waiting on pathology report and follow-up. My question is, at this rate of reoccurrence, can I just continue to get them removed and live my life normally? Seems expensive and risky to live like that. Any advice? My follow-up is not until July 3rd, so I'm getting inpatient.

DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...

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

2 years 10 months ago #55465 by DougG
Tmcbladder,
Welcome. The rate of reoccurrence varies. Yes, you can just continue to get checkups regularly, get the tumors removed and live life normally. I would give the doctor a week (June 23) and then call and ask if your pathology results are back and if they are that the doctor call you. I'm not sure the doctors understand how antsy we get waiting for results.
Best wishes,
Anita

Anita
Forum Moderator
Caregiver

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

2 years 10 months ago #55466 by sara.anne
I would like to expand a bit on what Anita mentioned. As you are probably aware, bladder cancer has a nasty little habit of returning sometimes. If your tumors were low grade, and did not return multiple times (and your urologist has to determine what "multiple times" might mean) it is possible to go for quite a while with careful surveillance and removal each time. When "multiple times" becomes too much, a different approach is necessary.

In your case, the initial tumor was high grade. This means that its cells are rapidly growing and have the potential to spread relatively quickly, which is why your urologist immediately recommended BCG. BCG is not usually used initially in low grade bladder cancer....only if it repeatedly returns. If HIGH GRADE bladder tumors return more than a few times and cannot be stopped with BCG, other measures are indicated. This can include, for example, BCG with interferon.

You need to sit down with your urologist and have a serious talk about possibilities and options. And, depending upon where you are being treated, should it return yet a third time you should consider getting a consultation at a center that specializes in difficult bladder cancer cases. High grade bladder cancer is nothing to fool around with.
With good care it can be handled.

Wishing you all the best

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.

2 years 10 months ago #55470 by tmcbladder
Thanks Sara Anne & Anita-

Yes, I'm anxious and plan to call and see if I can move up my follow-up appointment, so I can get those results sooner than July 3rd. I do also know that I did not mention before that they found the CIS flat tumors in my bladder as well last Friday. I'm not liking what I am reading about those nasty boogers. Last night I decided that after I speak with my (general urologist), I owe it to myself to also seek a 2nd opinion, as I am only a couple of hours drive from Duke University Medical where they have a huge team of bladder cancer specialist. Can't hurt, right?

Has anyone here had the CIS tumors? And has anyone here had Interferon treatment? He mentioned going that route to me before surgery last Friday, but that was also before discovering there were more tumors that expected and before knowing I had the CIS tumors.

Thanks again for weighing in. I try to keep a sunny disposition when talking to friends and family so they don't actually know how scared I really am, especially with my husband. He is there for me, but he cannot handle realistic conversations about this without getting upset. Education is everything right now, so all the shares are much appreciated.

tmcbladder

DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...

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

2 years 10 months ago #55472 by Alan
Tmcbladder,

We all have been scared at different times so that is normal. I also like to remind myself that it is "one day at a time" as that is all we can control. This is still a beatable and treatable disease! Many here have had CIS along with the papillary form of BC which are the 2 most common. You are not alone.

Getting a second opinion at a first rate center and I understand Duke to be excellent, is a good idea. A set for fresh eyes and perhaps cutting edge treatment is usually found. I have also learned to wait until all the tests are in as so many different twists and turns are involved as individuals.

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.

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

2 years 10 months ago #55474 by sara.anne
I had both also. Fortunately, no recurrence. One of the problems with CIS, which is more like a rash on the bladder lining, is that in addition to being high grade it is impossible to remove like a mushroom-ish papillary tumor. BCG is sometimes very effective with CIS.

I think a consult at Duke is an excellent idea!!! This is not something you want to fool around with.

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.

Moderators: Cynthiaeddieksara.anne