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Bladder sparing
Im just curious, I have been on this forum, for about a year now, I have seen no other blogs about patients who have gone the bladder sparing route. Im just currious as to why this is. Is this Page strickly for bladder removal? Im looking to converese with people who have taken this approach. Any info is appriciated
Thanks Joe -
9 Replies
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Hi, Hang in there and just try and get things in order, its tough at first, but then you get into a routine. Bladder sparing is not for everyone, it has its limitations. Just be sure that your uro is on board with you all the way. Mine was very helpful and has been suportive. The first uro i had was not, so of course he is gone.Feel free to ask me anything you want. I will let you know this. It is hell on your nerves, you tend to secound guess yourself at times, but i feel this was the right direction for me to take. Please, make yourself familier with all the options , pros and cons, possible outcomes and reacurrance. Also wacth out for those who have horror stories for you. I have found that you never seem to get all the facts from them.
Joe -
When I get an appointment to review the next step for me the bladder sparing route is certainly an option I want to discuss. To date I have been so stressed during my appointments after the TUR, it is only after, that I realized I did not even ask where the tumor was situated in the bladder and what other options are available apart from the RC. The CT scan does not even show any bladder abnormality. I just need to get the appointment organized :-
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Wow, thats great, our system was the same here, our urologist locally was linked to the Cleveland Clinic, so Dr. D’Amico our first urologist did the first turb then he set up our appt. to Dr. Campbell, sure makes it simple and not much work for us, we were happy as well with the Clinic, but not happy about loosing the bladder..but it had to go. Glad thing worked out for you…Ginger
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Almost a yr. ago I was diagnosed with a leiomyosarcoma (extremely rare and aggressive tumor) on my bladder. It was very near the ureter and through the bladder wall. I was set to have a cysectomy on Jan. 24 of this yr. at the Cleveland Clinic. Half way through the procedure the surgeon talked to my husband telling him the tumor was not as large as it was seen on the CT scan, apparently much of what they saw on the scan was inflamed tissue surrounding the very small tumor. The pathologist in the surgical suite tested all tissue removed and several lymph nodes, an ovary and other sites close to my bladder, all were negative for cancer cells, except the tumor itselt. I had a partial cysectomy, leaving approximately 1/3 of my bladder. The final pathology report received two weeks post-op was the same as was diagnosed during the surgery. What was in my favor was the location of the tumor, which caused severe pain during urination. Part of the surgery entailed removing the ureter and then it’s re-implantation. If the tumor had been in another place on my bladder I would have been in big trouble.
I have had 3 post-op CT scans, all clear. In July, the radiologist told my dr. he would have never known I had had anything done to my bladder, it is back to a normal size and shape.
The docs are still shaking their heads with my case, very unusual tumor with a very unusual, but wonderful, out-come. I had no further treatment.
From an extremely Thankful,
Claysgg -
[quote author=joeburg55 link=topic=1399.msg10321#msg10321 date=1195049928]
even back then, they new that a tur alone would not help a large group, it realy makes no scense to do that, Yes it is very scarey that they would even take that approach, Go figure.
[/quote]There is nothing scary to me about about the MD Anderson study. As we know from this website, there are tremendous differences of opinion among doctors (and patients) on the best course of treatment. Patients in the study were offered cystectomy, they knew the risks, they made what seemed like a reasonable choice to defer cystectomy because diagnostics indicated that, after their last TURBT, they were free from residual tumor (though we know that understaging occurs about 40% to 65% of the time).
Actually, I think this study is a great example of determining the outcomes for patients who, when informed of the same treatment options, decide on different treatments.
Invasive blc is not an automatic death sentence. 12 of the patients in this study still seem to be free of cancer and I imagine they are still reasonably content with their decision. And even for those whose cancer had progressed to the lymph nodes…, chemo will work for some…
The patients had a right to choose their treatment, and the doctors were right to study the outcomes.
Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)
even back then, they new that a tur alone would not help a large group, it realy makes no scense to do that, Yes it is very scarey that they would even take that approach, Go figure. Thanks for the info
Joe
The article Dan was referring to is about using TUR only for muscle invasive blc, and not using any chemo+radiation or just radiation or just chemo…it was a small investigation into the feasibility of using tumor resection alone. It is a scary article that highlights the shortcomings of present diagnostics.
Dan sent this to the email group, so I’m copying his summary here:
Organ Preservation For Muscle Invasive Bladder Cancer
By Transurethral Resection… evaluated 327 patients with muscle-invasive
bladder cancer who were treated in at M.D. Anderson
from 1997 to 2002.… Repeat bladder tumor resection was repeated in
all patients. If the patient had no residual
tumor…, …bladder preservation was offered.…Patients who opted for bladder preservation by
transurethral resection alone did not receive
intravesical therapy!!!… 35 (11%) were eligible for bladder preservation
… 27 elected to pursue this approach
… 8 opted for immediate cystectomy (… 4 had no
residual tumor and one died from metastatic disease)… Of the 27 patients who did have bladder
preservation, 15 experienced subsequent tumor
recurrence, 8 of whom underwent radical cystectomy.
Of the 8 that had a delayed cystectomy 4 had node
positive disease and 5 had extravesical disease…They conclude “Bladder preservation using
transurethral resection is feasible in selected
patients, only 11% of the eligible population.
Unfortunately, despite close surveillance 30% needed
a cystectomy and of these 8 patients 50% had node
positive disease and 62% had extravesical disease.
This highlights that our current surveillance
programs are inadequate to identify recurrent bladder
cancer at a curable stage.”Hey, read the new article on bladder sparing by dmartin, its interesting, and speaks to your concerns…Ginger
Hi Joe,
I take it you mean bladder sparing instead of cystectomy for invasive tumors. You’re rigth, folks on this path are not posting on the forum. There is one old timer on our email list who had the ‘combined modalites’ of TUR, chemo and radiation as per the Mass. General protocol, Mike Mann. His story is in our “Tales from the
Trenches” if you wanna have a look. I think he just passed the 7 yr free mark.It’s not an easy route, but under the right circumstances it has shown itself to be a good option. There are ongoing trials all over the world using it, as well as seed implants (brachytherapy), with and without chemo. When it comes to the chemo-radiation combo, cisplatin is most often used, now they’re trying Gemzar too. The UK and Netherlands have very good protocols using radiation and no chemo for bladder sparing. The USA doesn’t agree that it’s a helpful option on its own.
Before anyone says this is an experimental treatment and not a standard one, I have to point out that every single treatment is also still being investigated in various trials, protocols for chemo vary, whether pre or post op, combos and even doses and schedule vary. There are options to choose from, though you have to be under guidance of a good smart uro-onc before you get fancy with something like bladder sparing. Even various cystectomy techniques are in trails (robotic, laparoscopic, neo, etc).
Webcafe’s main site has pages discussing the pros and cons, if you are interested,under ‘treatment options’.
I’ve met one woman who had this treatment but it did not work, the cancer came back, she had BCG and eventually a cystectomy. It can be extra tough if it doesn’t work…and definitely needs a dedicated person who is not afraid of the very close follow up that is needed.
People who do this treatment have told me they don’t want to post because they get hate mail from others! I was shocked to hear that, as I’m sure we’d agree those who choose a trial are just as welcome to post as anyone else.
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