partial cystectomy

• By phallon
• Posted August 15, 2008 at 6:19 am

Hi,
If its just a biopsy then you should not be laid up. If they go in an remove the tumor it all depends on your own body how fast you recover. When I had my tumor removed in 2003 on a Fri I was back to work on Mon. I still had the catheria in me but still felt able to go to work. I was in my 50's back then.
I wish you the best of luck & my prayers will be with you.

Phallon

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• By NYTechy
• Posted August 15, 2008 at 7:57 am

My understanding (as a recovering patient from that surgery in June 2008) is that partial cystectomy is a good treatment option for bladder cancer only in select cases. I am wondering why you are being given this treatment as first line when (apparently) your team has no clue what type of tissue they are dealing with. I would ask them why they are not expediting the initial cystectomy either to get a biopsy they can analyze, or removing the area at risk if you are a good PC candidate, with safe margins around the area of disease visible on the scan, so that they can determine the tumor type and finalize a full treatment plan if such is necessary (ie. malignant tissue is present).

You say that the tumor is behind the bladder lining - do you mean outside the bladder or inside? If inside, then some kind of biopsy and/or removal ought to be possible via cystoscopy. If outside, then I don't understand the delay in getting in there to get the (possibly bad) stuff out and analyze it. I also don't understand why you might have to wait longer to discover the type of tissue that is removed. Once the pathology lab has 2-3 days to analyze the cystectomy tissue your treatment team should have a crystal clear idea of where you stand, and be able to discuss ongoing treatment with you (or we hope, tell you that it was benign!).

In my case, I went thru initial diagnostic scans (for suspected kidney stone) after presenting with hematuria in 4/08, has a TURBT in 5/08 and then the cystectomy in 6/08, at which time the tumor was recategorized from the TURBT pathology as an unusual and aggressive tumor, similar to serious lung cancer. Even though the pathology showed the edges of the tissue were cancer-free, I just completed chemo cycle 2 of 6, the course of chemo being targeted to clean up any microscopic traces.

I don't want to be alarmist, but you can read many stories online where proactive patients altered the course of their treatment and achieved better long-term prognosis by questioning, or replacing, their treatment teams. Two months seems like a long time to find out what you are dealing with and if you are unhappy with the wait, you are quite right to question your team and get a second opinion.

If you have this option, try to find a nationally-recognized cancer center within your area. Anderson, Cleveland Clinic, Sloan Kettering all spring to mind. Shift the odds in your favour, feel good about your team, and let's hope this all turns out to be a false alarm.

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• By CandyB
• Posted August 15, 2008 at 4:09 pm

I agree that your posting leaves a lot of questions to be answered, but I will share my experience.
First of all, bladder tumors are rarely benign. What is important in determining your future is the stage and grade of the cancer. If your urologist has not given you that information (and he or she should have), look up the information online.
If your tumor is within the lining, how did they discover it? I know that in the end mine was only visible on a CT scan, perhaps that is your situation.
Partial cystectomies are rare, but I had one 20 months ago and am doing well now.
I had three TURBs prior to my partial, and I believe that the writer who said she was back at work on Monday is referring to a TURB (transurethral resection). I, too, was back at work on Monday after having TURBs on Friday.
A partial cystectomy is much more serious and involves cutting open the pelvis to actually remove part of the bladder, not just the tumor.
Two surgeons performed my partial cystectomy, and I was in the operating room for four hours. Going in, they did not know if they would be able to do just the partial, it depended on how much cancer was present. It turned out the cancer was limited to one area of my bladder, and there was none outside of the bladder.
My path reports showed no more cancer in the bladder. My lymph nodes were also removed, and there was no cancer in those.
In my case, the cancer was growing near my left ureter, so it was reimplanted. I also lost an ovary, to make room to the newly directed ureter.
I was in the hospital for six days, and home from work on disability for six weeks.
My cancer was, from the beginning, stage one, grade three, no Mx.
I now get regular cystos, CT scans, bone scans, and all is fine.
My partial bladder works perfectly, by the way.
Yes, partial cystectomies are rare and appropriate only when certain criteria are met. I hope you are one of the lucky ones, like me, who survives this disease with an intact bladder.
The key to my success was finding a skilled, experienced urologic oncologist. Finding him took a lot of work, and some very important divine guidance.
Good luck, and keep us posted.
Candy

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• By angel86
• Posted August 15, 2008 at 4:35 pm

thanks so much for the detailed info everyone!

this is how the whole thing came to be so far....

I had some tenderness in the lower pelvic area when i went for my yearly exam and so my family doc sent me for an ultrasound......they discovered "something" then and sent me for a CT. Through that they discovered the tumour (at the time we did not know it was located behind the bladder wall(lining) on the inside of my bladder). I then was sent to a urologist who did a cystoscopy but could not find the tumour. After going back to look at the CT he determined it was because it was behind the lining so could not be seen with the camera.

After showing me the CT and tumour etc he said it was going to have to be removed and he was going to do a partial. Having not been able to see it with the camera he could not make a diagnosis as to whether its benign or not. He also said he couldnt do a biopsy because of its location and he said either way it had to be removed. Well as you can imagine this was a lot of info to digest. Thinking i was going to just probably need to get the cyst cauterized and be done with it!

I have done ALOT of research online and I havent had much luck in finding out what the odds are that its cancerous. and that is soooo frustrating. The urologist says he's booking in October for "confirmed cancer" patients and booked me for the first available date. Some my family says its obviously not cancerous or he wouldnt be waiting that long...I wish I shared their optimism. Like I said, he's booking confirmed cancer surgeries in october......so I guess all I can do is wait.
To my understanding, because he doesnt know if its malignant or not, grade and stage are not known...does this make sense??

My biggest fear was losing my whole bladder obviously, and Im thankful to hear the encouraging news that things should be in tact with a partial!!!

I must say that I really liked the urologist oncologist and feel confident with him. Im just overwhelmed. Things started to all happen so fast and then when the doc calls you at home you know you are not getting great news :)

at this time, the hardest part is for my husband and myself to not know if its cancer or not! I found out about a month ago and like i said surgery's not until october 14......so the waiting is the hardest.

Im trying to absorb the fact that i'll have to be laid up for a period of time.....thats alot for me at this time given how busy things are for my family. The fact that I may have cancer is almost something I cant digest

Thank you so much for giving me information, support and your time. Im glad to hear that you are all doing well and I feel encouraged by your stories.

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• By NYTechy
• Posted August 16, 2008 at 10:39 am

Regarding your options for earlier surgical removal and proper pathology analysis. Try to find another urologist who can do it quicker. If your current specialist has a two month lead time for confirmed cancer cases, seems to me he is too busy to give you the attention you deserve both now and going forward.

In my case the partial cystectomy was done two weeks after I first contacted my current team, after transferring from a urologist who had been less than upfront about the CT scan results and initial pathology. That's possibly extremely quick because the tumor was evaluated to be highly aggressive, but you get the picture. Until you know what you are dealing with, don't let the doctor be 100% in charge. Nobody has a bigger stake in your survival than you and your family. Be a squeaky wheel for a few weeks, it might make all the difference if only in the end to your peace of mind while waiting for an "all clear".

A more sophisticated option for imaging that you might suggest is a PET scan, which shows high levels of cell activity sometimes associated with active (malignant) tumor growth. Has your urologist considered this as a means to check the activity level in your suspect area? This might at least ease your concern if you do decide to wait for the October slot to come around.

Candy, Angel - in my case partial cystectomy did not involve cutting through the pelvis - my incision starts one inch below the navel and goes vertically down until the surgeons ran out of real estate, if you take my point.

My smaller bladder is also working fine although I am still up more at night (easing off steadily as capacity resumes) and in the first few weeks after the op I had to plan even the shortest travel oustide around frequent rest stops. I definitely consider it a major bonus not to have had an RC at this point.

I am finding it helpful to restore stomach tone in the lower abdomen by exercising the tummy and lower back, and also the Kegel (sp?) exercises for bladder control that pregnant women are given have helped me feel more confident. All of this seems to reduce the pressure on the bladder from the scar tissue on my tum, and my capacity is up from 250ml to 350 ml in the past 3 weeks. Down to only an occasional overnight accident now ;-)

All the best.

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• By CandyB
• Posted August 18, 2008 at 11:51 am

To techy,
Actually, my cut and yours were the same. As my surgeon said, from my belly button to my pelvic bone. . . My scar is my badge of honor.
I agree that Angel needs to be proactive, and I know that can be difficult. That is why I mentioned the importance of finding the best doc you can. My first urologist was unsure of what he was dealing with, and ignored the CT scan that showed the thickening in the wall of the bladder. If I hadn't sought a second opinion and a new urologist, I probably would not have a bladder right now, and I possibly could be facing even more dire consequences.
As for the continence issue, everyone's experience is different. I have always been one of those people who could "hold it" all day, so it is not surprising that my bladder worked perfectly as soon as the cath was removed.
Techy, I don't know anyone else with a partial. When was yours, what were the circumstances, and how are you doing?
Candy B

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• By angel86
• Posted August 18, 2008 at 12:00 pm

Hi all!

The urologist did say my scar would be like yours...atleast by the sounds of things.

I cant help but wonder if this tumour has grown from the inside of my bladder outwards (although it would show that when I had my cystoscopy would it not?) My bladder looked perfect during that! The urolgist says its behind the lining (between it and the muscle) Is it for certain that it started IN my bladder or does that even matter....Grrrr so frustrating!

They did check my urine obviously for cancer cells and there were none thankfully BUT if this tumour is under the lining would it have necessarily showed up??

I so appreciate your in put I just wish I could meet with the doctor again to ask all these questions that have since been thought of. I do not see him again until my pre-op Sept 29!!!

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• By CandyB
• Posted August 18, 2008 at 7:15 pm

Angel,
Why don't you call the doctor and ask your questions?
Your health and possibly your life is at stake. You need and deserve all of the information you can get.
If this doctor is not accessible, perhaps it is time to find another doctor.
Sorry if that sounds harsh. I know how difficult this is. One of the lessons this disease teaches us is to move outside of our comfort zone to become our own advocate. I wish I could be there to help. I am on your side.
Candy

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• By angel86
• Posted August 18, 2008 at 9:52 pm

Candy....I cant thank you enough for guiding me through this craziness! I will call the doctors office and see what information I can find. I know I have to get stronger.....I'll let you know what I find out.

I am a positive person so I think that will pay off :)

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• By Karego
• Posted August 19, 2008 at 11:41 am

Angel, One of the most important questions you need to know from your urologist is how much experience he has with bladder cancer and how many surgeries he has done. From what you are telling us, he doesn't have a game plan for how to proceed when he does your surgery. He needs to know what he is dealing with prior to surgery so he can give you choices as to what type of surgery to perform. I, personally, don't have a confident feeling that he knows much about bladder cancer. Either that or he isn't forthcoming in sharing his knowledge. The schedule for your surgery in Oct. is precious time wasted that you could be finding answers.
I highly suggest that you seek a second opinion.
Those of us who have traveled your path, have learned that the medical profession and many urologist don't know much or aren't trained to deal with bladder cancer. If he routinely does bladder cancer surgery, then he should be able to answer all of your questions and would be happy for you to seek a second opinion.
Time is not on our side where this nasty cancer is concerned. Until you know differently, you must proceed as if it is indeed bladder cancer.
In the meantime, research for yourself and learn all you can. Knowledge is power. Karego

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• By foman
• Posted August 19, 2008 at 1:08 pm

I think I have had this surgery. I had bladder cancer last december. My surgery was on April 16th. I had a stage 3 cancer. They removed my bladder, prostate, lymph nodes, and something else (i cant remember). I am doing very well now. If this is what you are going to go through and would like to talk more, email me at "forrestbwp@comcast.net" in the subject line, put bladder cancer. I look forward to hearing from you.
Forrest

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• By CandyB
• Posted August 19, 2008 at 1:15 pm

Foman,
It sounds like you had a radical cysectomy. A partial involves removing part of the bladder. The area containing the cancer is cut out, with the remainder of the bladder stitched back together to leave a functioning bladder.
It is usually done for non-invasive cancer, but Sloan Kettering did a fascinating study showing much success with partials in patients with invasive bladder cancer.

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