Thank you Cynthia. i have pretty much came up upon the same research but some of your items were new. I have no health reason to not have my bladder removed, the reason bladder preservation was offered is because they don't offer cystectomy. Dr Konety already told me that that is NOT a reason to not consider it.
The other reason I am cosidering it is because it came up again and again, that the surgeon has to be able to get all of the tumor out. Mine left half of it in and was unable or unwilling to immediately do a 2nd turb when Dr Konety wrote up in his exam that he saw tumor after the cysto, the PET/CT showed tumor left, and urine cytology was positive. Even then, my uro told me he was booked up until May and unable to schedule me which is why i asked Dr Konety to do it this month. When I was waiting in my uro's office a week later, I saw him schedule someone else for surgery in March while I was sitting there, so I think he lied to me about not being available. He just wouldn't do it. It cost me at least three weeks of delay in chemo because Dr Konety wants to re-TURB and restage before chemo.
The fact that I don't have a reliable (or honest) uro AND CIS makes me want to get the cystectomy and get it over with.
Good stuff Cynthia from someone who's been through it. At the time i was diagnosed which was over 6 l/2 yrs ago I also went to Mass. General to discuss bladder sparing with Shipleys team. They were extremely personable and convincing......I took all the paperwork home and dug through it. I contacted the head of the local Cancer Center here and talked to the main oncologist and ask him to help me read between the lines of the study. There are some flaws and it helped me to make my decision. I also had CIS and muscle invasive T2 tumor. What i did do and fortunately was able to do insurance wise was seek out one of the best surgeons specializing in females and cystectomy. I researched the types of diversions and decided for my own reasons on an Indiana Pouch....i got a bit of resistance from one top surgeon on my choice...but all the others and i interviewed 7 agreed with me on my choice. The surgery isn't easy but i've never looked back....i took control and even Hal, my trusty Indiana Pouch, is very cooperative these days. He was a bit feisty at first but its kind of like a new baby. I only have to empty 4 times a day and i sleep 8 hrs through the night. I've never had a UTI and i contribute most of my success to the single solitary skill of my surgeon.
Sonja....you have a great surgeon in Konety......
Thank you for replying. I didn't know CIS doesn't show up on the PET/CT. Dr Konety said due to the CIS I would not be a good candidate for preservation but I "could do it if I wanted to" . My other uro said CIS didn't matter and the chemo/radiation protocol is to preserve the bladder and they claim it has the same success rate as cystectomy. The problem is, if this fails, it has a 50% success rate, you can not get a cystectomy due to the amount of radiation you end up getting. Even though my uro says it has the same success rate as cystectomy, at least with cystectomy if cancer comes back you are still eligible for chemo and or radiation so it's like you have a second shot. That is why I'm leaning cystectomy. Also the side effects of chemo can be permanent (memory loss,neuro problems,lymhomas and god knows what else) and it can cause other cancers in the future. It is a very hard protocol with chemo 2x week and radiation 2x day for five days a week.The radiation makes you sick. They will not discuss side effects except to say I will get sick using the excuse that it's different for everyone. That is what's scaring me. This is very hard core stuff and impacts quality of life. If bladder preservation had such a good success rate, I wonder why more people aren't offered it or know about it.I also wonder if the chemo drug companies pay uros for these referrals and that may influence their treatment decision. I don't feel comfortable with this.
10 years 3 months ago - 10 years 3 months ago#24565by Cynthia
My first question to you would be is there a medical problem that would make a Radical Cystectomy (Bladder removal and reconstruction) not advisable? Or have you voiced that you would not have your bladder removed to your original Urologist?
I underwent the bladder saving protocol through the group that pioneered the study at Massachusetts General Hospital in Boston. It was a nine month protocol that included 40 trips to radiation therapy and 12 trips to chemotherapy. It is a very hard protocol to do physically not only time wise but the toll it takes on your health during the process. At the time I entered into the protocol I did not know I also had CIS or the indications of what this could mean all I was told was that I was T2 G3 and a good candidate. After completeing the protocal the cancer returned again and again and in a little less than a year of ending the protocol I had to have what they call a salvage RC. Knowing what I know now I would have gone straight to RC as my choice of diversion was limited by the fact that I had had pelvic radiation and the fact that a tumor had formed very close to my urethra to do a neo bladder even if they could. We traveled to Chicago to use a surgeon who specializes in urinary reconstruction following pelvic radiation and I was able to have an Indiana pouch as all anyone in Boston could offer was an external pouch. This last January I lost a kidney do to complication of radiation scaring.
Now having said all of that if someone did not have CIS the choice of trying to save the bladder would ok as it does work out for quite a few. But even then there can be lasting effects from the chemotherapy and radiation. Neuropathy (nerve damage), lose of bladder elasticity causing lose of bladder volume, serious complication from high volume extensive chemotherapy during treatment, intestinal damage along with other risks. Now having an RC has its obvious draw backs as well but I can tell you it would have been a lot easier on me if I had not done both. I would have still had chemo but a much shorter course and skipped the radition all together. There are no free rides here and the choice is of course a personal one but do your homework and you may even wish to print out some of what follows to share with your doctors. I did a search on bladder sparing for blc w/ CIS and have included treatment guidelines from the NCI and AUA they are the first two. I hope this helps and know we will be here to support you no matter what you decide to do.
“Only CIS was significantly correlated with all end points on multivariate analysis. While the presence of one or two risk factors was not related to recurrence, progression or cancer-related death, the presence of all three risk factors predicted the latter. Conclusions: While no guideline has been established for the decision between cystectomy and bladder sparing, concomitant CIS and the presence of all three risk factors together seem to predict an adverse oncological outcome in the bladder sparing approach.”
By Michael J. Droller, American Cancer Society the report on bladder sparing w/chemo and radiation begins on page 301
“Continuous improvement in surgical techniques andperioperative care greatly reduced morbidity and lateeffects of surgery, including sexual dysfunction. Consequently,neobladder and continent diversions are beingincreasingly accepted by patients. Thus, bladder preservation,with all of its associated risks, currently is not abetter alternative to cystectomy for the majority ofpatients. The following points further underline thisrationale: (1) Muscle-invasive disease is associated with ahigh incidence of CIS, multifocal field disease, and a highrecurrence rate that can be invasive and lethal. (2) Therole of radiation therapy in bladder preservation needsfurther evaluation and remains experimental at this time.(3) Improvements are needed for chemotherapy to providebetter results and reduce toxicity. (4) The incidenceof upper tract tumors in patients who have not had a cystectomyis high. (5) The strict criteria for patient selectionand the need of a specialized team of urologists anduropathologists make it difficult to recommend bladderpreservation in a community setting. (6) Based on experienceat our center, the long-term results of bladderpreservation support the need for early cystectomy. (7)Salvage cystectomy compromises the option for neobladderformation. In the future, new markers may allow us to moreappropriately select patients for bladder preservation.Continued improvements in chemotherapy may permita more aggressive approach in some patients, eventhose with micro metastases, and thus allow combinedradical surgery and effective adjuvant chemotherapy.”
Radical Cystectomy for Transitional Cell Carcinoma
of the Bladder: What Percentage of Patients
Qualifies for Bladder Preservation Protocols?
Vitaly Margulis Joshua M Stern Arthur I Sagalowsky Yair Lotan
Department of Urology, University of Texas Southwestern Medical Center, Dallas, Tex., USA
“Most common clinical criteria leading to exclusion from
bladder sparing protocols were presence of multifocal
invasive disease, inability to perform complete TUR
and concurrent multifocal CIS in 46.6, 31.0 and 29.3%
of patients, respectively.”
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
10 years 3 months ago - 10 years 3 months ago#24559by mmc
I also had CIS and the thing about that is that it doesn't show up on the CT/PET. I'm not sure if they can truly know that it is all still contained in the bladder until the go in there and take things out.
Is the chemo/radiation an attempt to save the bladder instead of doing the cystectomy?
Nobody presented me with that option and quite frankly I wouldn't have been interested in that option at the time either. I wanted to maximize the probability that we could get it all before it spread so I went straight to cystectomy as soon as possible after identifying the return of my CIS and that it had penetrated the bladder wall into the muscle.
They took 41 lymph nodes during my cystectomy and all were cancer free.
I'm sure others here have experience with the chemo/radiation but I don't know the success rate when compared to cystectomy. My understanding is that cystectomy has a better cure rate which is why we didn't bother considering anything else. My uro at the cancer center decided that I didn't require any chemo or anything else after the cystectomy.
For a time there was a thought (due to cytologies and kidney testing) that my CIS may have spread there but that turned out to be a bad test and the follow up after cystectomy showed that the kidneys were clear.
Best of luck in your decision. No matter which path you choose, I hope it all goes well.