Forum

× Welcome click the New Topic button to post

My TURBC is over

7 years 1 week ago #40390 by mmc
BCG is still the best treatment. It may sound weird and needing to have bleach for the toilet may seem strange but it is still the best. I had CIS and was on it but I had severe reaction and my doc took me off of it for fear of sepsis. I tried and tried to convince him to keep me on it.

Even though it is different for low grade, multiple tumors in multiple locations is standard protocol to use BCG and it is the best (as others have stated). Just want to be clear nobody thinks I am recommending waiting in the case of multifocal low grade tumors.

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.

7 years 1 week ago #40389 by maryland_mike
pemquid wrote:

PST--

First, congratulations on the pathology report results! It's difficult to deal with the emotional roller coaster when you are first diagnosed and starting the bladder cancer "journey." But, at least you have your good news before the holidays, and can perhaps begin to relax a bit now.

It sounds to me as though your urologist is following the standard and solid protocol for tumors of this stage/grade and number. I initially had a single tumor of the same type as yours, and it was only when I had a recurrence of 2 very tiny tumors 2 years later that my urologist recommended BCG. I was doubtful about that since I'd read BCG wasn't considered all that useful for low-grade tumors. I called my cousin, a radiologist specializing in the urinary tract, who works at a major NY teaching hospital. He concurred with my urologist's BCG recommendation. Since the recurrence was in a different area of the bladder than the original single tumor, the way my cousin worded it was that "the recurrence indicates your bladder lining wants to grow tumors." I've just completed the full treatment protocol for BCG, and am doing great.

Hope your future check-ups are "all clear," but know that if you do have a recurrence BCG may be the way to go

Ann


PST and Ann - I'd like to add a 2nd doctor's comment on multiple tumors. I went to the Chief of Urological Oncology at a very large regional hospital for my 2nd, and after reviewing my case (Ta,Mx, Nx) and TURBT photographs, he said "since you have multiple areas with papillary carcinoma, I consider your entire bladder to be at risk" - and thus he agreed with my local urologist on using BCG therapy for me (I have non-invasive low-grade tumors). I agree the literature shows BCG to me more effective against CIS; however, I see writings and studies that show effectiveness of BCG against Ta is better than other intravesical treatment options. I'm very happy with my treatment regimen - I'd rather be aggressive than passive on this one.

Cheers - Maryland Mike

TURBT, HoLAP, bladder stone ablation 9/28/11
Ta, Mx, Nx

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

7 years 1 week ago #40388 by PST
Thank you all for kind words and good advice. Ann's comment about BCG reminded me that when I told my mother I had undergone a surgical procedure, she explained to me that her brother, who is in his 80s and also has bladder cancer, told her that he was treated with cow tuberculosis germs to bolster his immune system. I had a difficult time convincing her that this is a real treatment, but then I still have a little trouble believing it myself. BCG still sounds to me like something from a National Lampoon parody issue of the New England Journal of Medicine.

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

7 years 1 week ago #40378 by pemquid
PST--

First, congratulations on the pathology report results! It's difficult to deal with the emotional roller coaster when you are first diagnosed and starting the bladder cancer "journey." But, at least you have your good news before the holidays, and can perhaps begin to relax a bit now.

It sounds to me as though your urologist is following the standard and solid protocol for tumors of this stage/grade and number. I initially had a single tumor of the same type as yours, and it was only when I had a recurrence of 2 very tiny tumors 2 years later that my urologist recommended BCG. I was doubtful about that since I'd read BCG wasn't considered all that useful for low-grade tumors. I called my cousin, a radiologist specializing in the urinary tract, who works at a major NY teaching hospital. He concurred with my urologist's BCG recommendation. Since the recurrence was in a different area of the bladder than the original single tumor, the way my cousin worded it was that "the recurrence indicates your bladder lining wants to grow tumors." I've just completed the full treatment protocol for BCG, and am doing great.

Hope your future check-ups are "all clear," but know that if you do have a recurrence BCG may be the way to go

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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

7 years 1 week ago - 7 years 1 week ago #40364 by mmc
Pst

If you are going to have bladder cancer, that is certainly the best one to have.

Watchful waiting is common. As long as he has you coming back every three months for the watchful part, he is within treatment protocol. There is some debate over the effectiveness of BCG on low grade bladder cancer. It works great for CIS but be thankful you don't have that.

Anticlimactic is a good thing. Nice to be "geared up" but even better to not have to be! :)

Congrats on the good news and I hope you get to stay on cruise control.

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.

7 years 1 week ago #40360 by maryland_mike
PST wrote:

I got a phone call with my pathology results today: Stage TaNxMx, Grade 1. Some biopsies were done of the rest of the bladder and there were no signs of Tis. There was a second tumor just getting started next to the first, but otherwise I guess things couldn't be much better. I was told to come back in three months. The doctor does not recommend a repeat TURBT or intravesical therapy under these circumstances. I would be interested if anyone regards this as unsound advice with low-grade non-invasive disease, but two adjacent tumors. It sounds like Maryland_Mike's doctor would agree with mine about BCG because the tumors were in one area.

This is all great news and I ought to be elated, but I feel strangely down, maybe because I psyched myself up to get through this and have deflated a bit now that the crisis is over.

It sure is nice to have people to tell who understand what you're saying.



PST - That's good news regarding your staging and classification data! Hopefully you will remain in a stable condition for years to come. To reinforce your urologist's decision to wait for intravescial therapy and monitor your condition, I offer this segment from the NIH National Cancer Institute's discussion on Stage 0 (Ta,N0,M0 and Tis,N0,M0) bladder cancer:

"Intravesical therapy with thiotepa, mitomycin, doxorubicin, or bacillus Calmette-Guérin (BCG) is most often used in patients with **multiple tumors or recurrent tumors** or as a prophylactic measure in high-risk patients after TUR. Administration of intravesical BCG plus subcutaneous BCG following TUR was compared with TUR alone in patients with Ta and T1 lesions. Treatment with BCG delayed progression to muscle-invasive and/or metastatic disease, improved bladder preservation, and decreased the risk of death from bladder cancer."

Source: http://www.cancer.gov/cancertopics/pdq/treatment/bladder/HealthProfessional/page5.

The NIH NCI website has lots of information and references on our affliction.

Cheers - Maryland Mike

TURBT, HoLAP, bladder stone ablation 9/28/11
Ta, Mx, Nx

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 315 Guests 

Statistics

Total Messages: 50851 Total Sections: 1 Today Open: 0 Today Total Answer: 1
Total Subjects: 6515 Total Categories: 11 Yesterday Open: 0 Yesterday Total Answer: 3
Total Users: 7773 Latest User: WoundNurse
Powered by Kunena Forum