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Newly with bladder cis
I’m a 52 year old male and just finished my 6th treatment of BCG. There is a 75% success rate for CIS with BCG, I believe the reoccurrence rate is about 50%. I wouldn’t think about removing the bladder and I’m fairly certain that wouldn’t be the advice from your Urologist. My symptoms before treatment were really bad, I could only hold 3.5 oz of urine and would void approx.. 22 times a day. I had really bad urethral pain and would get up 5-6 times a night so never got good rem sleep. Since treatment I have “NO” urethral pain and I’ve doubled the amount of urine that I can hold. I’m getting up no more then 2-3 times a night and I expect improvement on this as time goes on.
I highly recommend BCG as a first option for your treatment, ask as many questions as you can with your Urologist.
Good Luck & keep us posted!!
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20 Replies
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PDL05RN,
I am glad you are getting to solving the BC riddle! Everyone’s situation is different and unique. Soon, you will be helping someone else!
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.
Hi,
Several of us on this site have had the same diagnosis : CIS with no muscle involvement and had had BCG/ 6 to start then maintenance follow up. So far we seem to be doing well. I am 6 1/2 yrs cancer free, Sara Anne and Joey are about the same time cancer free.
BCG is the first treatment of choice for CISWishing your husband successful treatment,
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Hi all,
I hope everyone is doing great. I want to update on my husband. Two weeks ago, we drove to MD Anderson and saw Dr. Kamat. Dr. Kamat performed another cysto. and patho confirmed CIS without muscle invasion. Since my husband’s bladder capacity is only 40%, we are thinking to go back to MD to have radical cystectomy. But, when we saw our new urologist in town, he convinces my husband to try BCG first. He will have his first treatment in July,11. Now, we just pray that BCG will work It has been a lot of crying, confusion, stress….
Thanks alot for all supports, opinions and encouragements!
Sara Anne, can I pm you a question? and how do I do it?
As Warren said (and I am no doctor) aspirin should probably be discontinued as bleeding can be a by product. On the biopsy. I too had clots passed which in all probability is your situation after it. My URO warned me about this and it still surprised me. The MD Anderson site: http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/genitourinary/index.html
You can self refer yourself. The site has a lot of info. There are several hotels nearby with one, JC Rotary House right on campus. I have several aquaintances with BC that have seen Dr. Kamat or Grossman. I also have heard good things about Dr. Denney. Basically the whole department is highly rated. They are my backup should I need more extensive therapy. As it a long way from your area, you may still be able to pinpoint someone at the Kansas Med Hospital that Sarah Anne had linked.
As an aside I have linked a good site about different diversions in case that is in your future: http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx
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.
About a week or more after a TURB the clots that form at the site of the biopsies start to be shed. I always had a little bleeding, internal itching, and burning. A few years ago my cardiologist put me on aspirin 81 mg. I stopped for the biopsies but was told I could restart afterwards. Aspirin interferes with platelet function thus preventing clots which is why it is used to help prevent heart attacks. The FDA recently concluded that there wasn’t sufficient evidence to recommend aspirin as a preventive. I’ll have to talk to my cardiologist about that. In any event, while on the aspirin I developed severe post biopsy bleeding and clots which obstructed my bladder. I catheterized myself a few times until I could no longer get the catheter to pass and then took myself to the hospital where I was admitted for continuous bladder irrigation. I couldn’t call bleeding “normal” but it does happen and until it is fully resolved your husband needs to discontinue the aspirin.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Thanks Alan, Warren and Sara Anne for your inputs!
This morning (10 days after cystoscopy) my husband urinate with bright blood and passing couple of blood clots. It was very scary. He drank alot of water then 3 hours later the urine was clear. I wonder is it normal? By the way, he was taking baby ASA daily for the last 3-4 day.
We’re thinking to drive to MD Anderson Cancer Center and seesking for second opinion, also my husband determine to have cystectomy and not messing around with BCG. So, do you know any Doctor at MD Anderson Cancer Center that does a good job with this type of surgery. Thank you!
Many centers for bladder cancer treatment are listed under the Treatment Center Finder accessed from the Home Page of this site. At the top of the page, click on HELP…then on Researched Resources…and you will find a link to a list of treatment centers.
Those closest to you geographically include the University of Kansas,
http://www.kucancercenter.org/cancer-information/specialties-and-treatment/bladder-and-kidney-cancerWashington University in St. Louis
http://www.siteman.wustl.edu/contentpage.aspx?id=677and the University of Iowa
http://www.uihealthcare.org/BladderCancer/Any of these would be a good place to start.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I did very well with the radical cystectomy, having a good recovery and not too difficult hospital course, but the cystectomy has not been trouble-free. While I have no regrets about getting rid of my bladder and the years of grief it gave me, the cystectomy has left me completely incontinent. I spent a year dealing with incontinence devices until I finally had surgery to install an Artificial Urethral Sphincter. It was activated after a 6 week recovery and I enjoyed another 6 weeks of a near normal life, and then the AUS eroded through my urethra resulting in swelling and severe pain. I have surgery to remove the device this coming Tuesday and hope my pain will resolve.
Of course I can deal with being incontinent, if I must, just as I have dealt with all the other crap bladder cancer has given me. Even though I ended up with a radical cystectomy before I developed invasive disease, it was a decision I arrived at rationally after consultation with several specialists, and after several recurrences of high grade cancer in a short time. And in the process of having the cystectomy, they found CIS in the ureter which I would never have known about. All things considered, even with all the pain I endured with the urethral stricture, the BCG, and other complications, and even though I am happy to be rid of my bladder now, I do not regret keeping my bladder for 12 years after the initial diagnosis.
Since I don’t have a crystal ball and cannot predict what course your husband’s cancer might run, I can’t tell you what your best course of action is. At the least, my story should demonstrate that with appropriate follow up you have time to decide about cystectomy, to get more than one opinion, and to find the best place for treatment.
I am a New Yorker, so can’t advise regarding treatment in KS, but hopefully someone on this board can help with that.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
I have not had to have a cystectomy but, have been able to keep my bladder. I understand your ooncern especially with young children. From my perspective give BCG a chance unless you are stage 2 (muscle invasive or further). There are many here that have gone this route successfully although I am ready to lose the bladder should that be necessary. While not speaking for Warren, he did go 10 years although not without problems (such as a urethral stricture as a complication). Stats are useful in one way and at the same time all of us are different so who knows what is in store?
While most on this board may not have a recommendation on what hospital is best in KS, most will tell you to get a second opinion. This disease is often under staged hence a second TURB is often done. Get to a teaching hospital or one that does a lot of bladder cancer! Too many URO’s see mostly prostatic cancer. You want a group that does all bladder or a big part of that. The medical school at Kansas must be in one of the larger cities so I’d start there. Perhaps someone else here will have an idea. I understand some of the travel problems. I have queued MD Anderson in Houston which is 3 hours from my home. It is peace of mind on this “sneaky” cancer comes back and wont hesitate if need be.
Good luck, keep asking questions.
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.
Thanks Sir for taking your time to explain. I’m so happy to learn that you are cancer free now. May I ask you …looking back 10 years from now would you do BCG treatment or would you do cystectomy instead? Since our kids are too young, my husband prefers cystectomy over BCG and not worried about this for the next 20 years. Do you know any good Cancer hospital and good urologist who specialize in Bladder cancer in Kansas or near Kansas?
TURB is transurethral biopsy. The TURB is done through the cystoscope. It is possible for the urologist to remove all the cancer at the time of the TURB. A big problem with CIS is that you can’t always see it all. BCG has an excellent track record for treating CIS. As with all bladder cancer, follow up to check for recurrence is crucial. I had CIS as well as papillary rumors 12/2000. I did not have any recurrences for 10 years, but then I had multiple recurrences and finally had a cystectomy.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Good morning everyone! I’m so glad to find your website. Thank you!
Fhern01, I’m so sorry with your bad new, I hope you don’t mind I join your thread. Our situation is exactly like yours. My husband is 50 years old and he just dx with CIS 4 days ago. We also have 2 small sons (age 5 and 11). We saw urologist and he already scheduled for BCG treatment. However, looking at the research, there is only 70% survival rate with this treatment. My husband is more than happy to do cystectomy at this time. We live in Kansas and we don’t know anything about the urologist that is specialized in bladder CA or any hospital that do the “high volume” of cystectomy ….It has been very hard for us in the last 4 days…confused, shock …. He already lost almost 10 lbs due to stress.
By the way, would you please explain what is TURB? My husband had cystoscopy with biopsy 1 week ago and the urologist decided to to BCG. According to what i read, should urologist do cystoscopy and remove the cancer cell first then do BCG treatment? Is it because my husband doesn’t has tumor???
Warren,
I always look forward to reading what you have to say. Good to see you back and hope the “extras” you talk about disappear!
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.
Great from a cancer standpoint. Otherwise…. If there’s a complication, I find it. I had an artificial urethral sphincter installed because the neobladder left me totally incontinent. After 2 months of enjoying the freedom of no devices attached, I’m swollen, in pain, incontinent, and scheduled to have the AUS surgically removed. C’est la vie! I’m cancer-free.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Warren, it is great to hear from you again. I have often wondered how you were doing, and it sounds like you are doing great.
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Sign In to reply.