I have an update.(Bladder Sparing vs RC)

15 years 1 week ago #24576 by Stephany
Replied by Stephany on topic I have an update.(Bladder Sparing vs RC)
Hi, Sonya! It's good to hear that you're educating yourself. And listening to yourself, too...look how smart you are getting.:laugh:

These survivors have a lot of wisdom, and, with your reading between the lines, and standng up for yourself, you're going to learn a lot. About both yourself and your cancer.

Hang in there. We're all waiting to hear from you.

Stephany in Iowa

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15 years 1 week ago #24572 by Sonya1
Replied by Sonya1 on topic I have an update.(Bladder Sparing vs RC)
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.

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15 years 1 week ago #24570 by Patricia
Replied by Patricia on topic I have an update.(Bladder Sparing vs RC)
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......

Pat

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15 years 1 week ago #24566 by Sonya1
Replied by Sonya1 on topic I have an update.(Bladder Sparing vs RC)
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.

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15 years 1 week ago - 15 years 1 week ago #24565 by Cynthia
Replied by Cynthia on topic I have an update.(Bladder Sparing vs RC)
Sonja,

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.

Cynthia

(Some of these you may have to register to read)

NCI Treatment Guidelines

www.cancer.gov/cancertopics/pdq/treatment/bladder/healthprofessional

UroToday from the AUA Treatment Guidelines

www.urotoday.com/browse_categories/bladder_cancer/treatment.html

Study comparing bladder sparing and standard treatment for T1 G3 showing CIS as being an indicator for poor outcome

cat.inist.fr/?aModele=afficheN&cpsidt=19238514
By Michael J. Droller, American Cancer Society the report on bladder sparing w/chemo and radiation begins on page 301

books.1d5920f4b44b27a802bd77c4f0536f5a-gdprlock/books?id=q19Iox_cJNUC&pg=PA304&lpg=PA304&dq=Bladder+Sparing+and+CIS&source=bl&ots=lpsQ6wqBEG&sig=vnvKsTXs-ljoZuCbJ6IWGrsBmnY&hl=en&ei=TL6_SbbYNMjgtgeui7FR&sa=X&oi=book_result&resnum=3&ct=result#PPA299,M1

Bladder-Sparing Treatment of Invasive Bladder Cancer
From Cancer Control: Journal of the Moffitt Cancer Center

cme.medscape.com/viewarticle/408997_11

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

content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=106524&Ausgabe=233774&ProduktNr=0&filename=106524.pdf

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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15 years 1 week ago - 15 years 1 week ago #24559 by mmc
Sanya,

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.

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...

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