Radical Cystectomy Surgery

I am just curious about something and I was hoping that I can collect data from those of you who have been through RC surgery, In August, my dad was diagnosed with High Grade Transitional Cell Carcinoma Grade 2-3 of 3. The tumor extended into the lamina propria and muscularis propria. This is, from what I understand doing a ton of research, a very serious situation since the cancer was high grade and had invaded the muscle. Three urolgoists told my dad that he had to have the RC. The issues was that none of of them could get him into surgery for 3-4 months. When I questioned this, I was told not to worry since this "cancer thing" did not happen over night. My dad went crazy waiting to have surgery for 3 months knowing that this cancer was inside of him. He did have the RC in late November, only to find out that the cancer had spread to the lymph nodes. While I can never prove that the spread occured during this waiting time, have any of you had to wait so long to have your surgery done? I think the doctor's were so wrong to make someone with his diagnosis wait for 3 months for surgery and I am sure that not one of them would have waited this long if it were happening to them. Again, I am interested in understanding how long you had to wait for the RC surgery once the decision was made to remove the bladder.
Thanks,
Terri

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I was diagnosed with T1 G3 bladder cancer also. My original urologist wanted to wait 2 months after my second TURBT and path report came back "suspicious for invasion". Because of that, I went to Sloan Kettering for a second opinion and they said I needed RC ASAP. My surgery was 1 month later. I do think surgery should be done asap.
I am sorry for your dad's situation.
Hugs,
Nancy

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Thanks for the response. To make matters worse, my dad received no type of treatment during the 3 month wait...not a thing. He had no other health problems and took no medications. He was just told to wait.

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Terri,
Unfortunately, your story is an all too common one. You are exactly correct that there is lots of urgency when a high-grade muscle-invasive bladder cancer diagnosis is confirmed. In my case, I had my RC surgery four and a half weeks after my TURB confirmed the initial diagnosis. With Grade III tumors, even that is considered a risky waiting period. As I said, these long waits are not unusual. A friend of mine was recently diagnosed with T2 Grade III bladder cancer, waited almost two months for the TURB, and still has not been contacted for an appointment to schedule RC surgery a month after the TURB. Fortunately, we have put him in touch with my doctor at USC Norris, who has scheduled him for quick surgery. I find it hard to believe that knowledgable professionals can be letting this happen, but clearly that is the case.
Your dad will be in our prayers.
Best,
Frank

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Hi Terri,

There has been some research on this issue and it seems that surgery within about 90 days of diagnosis results in little loss on a statistical basis. However, all of us would like our surgery sooner rather than later as one never knows when a specific tumor in a specific individual might get into the blood or lymphatic system and spread to other organs. My wait was about 2.5 months with a turbt about half way through the time period. By the way I was T1G3 with a strong suspicion that there was muscle invasion at the 1st turbt. I hope that your Dad will be one of those who does well in spite of nodal disease.

jj

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I was given the option to have surgery immediately or have chemo first. ( chemo first was advised ) and I chose that option.

I was diagnosed on 9th June 2010 ( some dates will stick in our minds forever ! ) and had RC surgery on 7th September 2010.

Will your dad now be offered chemo ?
Blessings and best wishes sent.

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Yes, my dad started chemo about 2 weeks ago. Unfortunately, he got an infection and had to be hospitalized for about 4 days. He is now doing better but is scheduled to start chemo again February 1st. I am in the process of coordinating my parents move to Phoenix so he can begin treatment with Dr. Lamm, who specializes in bladder cancer. I think that the change of climate (from Pittsburght to Phoenix), the involvement of being with family, and working with a doctor who specializes in bladder cancer is warranted. I am just hoping that we can get in to see Dr. Lamm quicky. Thanks for the responses.

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My husband was diagnosed July 3rd of 2007,,,,,,,surgery was Sept.14th,,,,,,,,we would have done it sooner if the 2 surgeons schedules would have accomidated it,,,,,,,,,,one was laproscopic surgeon ,other was conventional surgeon with an r/c,
I would think with the aggressive stage the time element is of a lets hurry up kinda mode...........humm......

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The waiting is torture because your mind can really mess with your head.
My father had blood in the urine in July, went for a cat scan where they saw "something" had the turbt in mid August and diagnosed on September 8, 2010 with stage 3 grade 3 aggressive muscle invasive bladder cancer.

I don't know what the wait would have been if we stayed with that doctor and stayed in the area but we saw a new urologist in Boston in October and he had his RC on November 1. I felt that the waiting between the cat scan and the turbt was too long but was told that is "normal"
Christine

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My history - Turbt and pathology report in December '03 for T2muscle invasive, High grade and went to RC in January '04.
Two to three months from diagnosis to RC (for those who do not have chemo prior to RC) is well within range. Chemo prior to RC necessitates a longer time frame to surgery.
Karego

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Here was our schedule of diagnosis leading to RC:

May 17th- Cystocopy, finding of a papillary tumor. Uro performed a biopsy that he should not have done. You either take all of it out or leave it all in.

May 25- Appointment with Second opinion

May 28th- First TURBT, finding of a second tumor (I often wondered since my dad's cancer was high grade if the original uro cutting into it when he shouldn't have cause a second one to pop up)

July 15th- Resection of tissue from first TURBT

July 25th- follow up appointment letting us know there was still active cancer, we were asked to make the decision of BCG and RC. weighed the pros and cons of each with the doctors, discussed it by ourselves

August 2nd- RC

We moved very fast with this but we also had a doctor that is in the OR 4 days out of the week. I'm also very impatient and didn't want to wait around. Truth is, no one knows how fast your dad's cancer spread. If there was just one tiny cell in his lymphnodes at the time of his TURBT, it could've done it all. However, I can agree that if the TURBT showed penetration of the muscle and it was high grade, then there should have been more of an urgency to get the RC done sooner...or at least a biopsy of the lymph nodes.

Good luck to you and your dad. I hope all turns out well :)

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My husband had BC the first time in 12/07, tumors that were papillary removed and followed up w/cystos every 3 months. It changed when got his stage 2 invasive BC diagnosis July 19, 2010. After hearing the local uro's suggested treatment of BCG, he went to Huntsman Cancer Center in Salt Lake for second opinion which was RC. It would have been done in 6 weeks, August 30 which the uro oncology surgeon said was within the recommended time. No later than 8 weeks, he said. July 25 saw a local oncologist and having had researched it, Rob agreed w/him that pre-surgery chemo would be next step. As he had to have a hernia repaired first, he started chemo Aug 26, all w/concurrence of Huntsman uro surgeon. Surgery consult in Los Angeles at USC/Norris Comprehensive Cancer Center was Dec 7 and RCw/neobladder performed Dec. 22. This was again w/in recommended 6-8 weeks of finishing chemo. Chemo had done its job and none of the 35 lymph nodes dissected showed any cancer either. He expects to have 3-month followups with full workup and CT scan for the next couple years at least. Hope this is helpful.

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I would like to see the doctors prove that waiting three months DIDN'T result in spread to lymph nodes!

I had R/C neobladder at Huntsman two weeks after my first appointment and decision to have surgery!

As patients I believe we have responsibilities for our care and treatment.. When doctors are unreasonable it should be our responsibilitiey to go to clinics/hospitals that provide reasonable services. Waiting three months for cancer surgery is absolutely unexceptable as far as I am concerned.

HighlandGuy

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Hi Terri,

The wait time for me was approximately 1 1/2 months. However, I had surgery in Feb for a perforated bladder; March appt with surgeon and April for surgery. There was some time alloted for healing from prior surgery - but I also had a fistula and was wearing a catheter and diapers - I was desperate for the first surgery date available to me. The surgeon said they re-arranged his schedule some to accomodate me - I was soooo glad.

Hope all goes well with your father; I know it will be better to have him close to you so that you can play a substantial part in his treatment plan from here on out.

-Tammy

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Hi Twist, I was diagnosed on 3/2 with high grade non-muscle invasive and had the RC on 5/1.

Initially it was scheduled for the end of March at Loyola Hospital, however i found out that my insurance wouldnt cover the procedure there so I ended up at the Cleveland Clinic.

I hope for the best for your dad

Al

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Diagnosed in Sept 08, RC in Oct 08.I couldnt have waited any longer, clotting was terrible,went in a day early due to massive clotting.

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Jim had initial biopsy July 16th, 2010, RC was on Aug 12th. He was diagnosed with pT4aN2M0. Prior to RC surgery he had many doctors appts: PET scan, Bone Scan, CT Scans. Blood work etc. Visit with radiotherapy oncologist, robotic surgeon, urologist, etc, etc. So, we went fast and aren't sorry for it. I am sorry that your dad seemed to have been "put off" but don't know all the specifics.

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Thanks for all the responses. I still don't understand why the urologists never referred us to an oncologists during the waiting time. It seems like everyone who responded to my request had something going on during the waiting time. I know that I can not turn back time, but I hope that others can learn from this.

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I feel vey much the same as you do .
Highland guy has great points.
I do not understand the wait . The added toll on your dad . Love , Pam

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Dear Twist---Maybe I'm premature in responding--as there are others here VERY MUCH MORE experienced about this---but, I appreciate your concerns and just had to respond. I'm 64---been diag. with "probable" BC about 14 months ago due to peeing blood. Had to get 1st 5 day hosp. stay due to heart atrial-fib. and high blood pres. They won't do cysto under "general" until they cleared heart problems and stress test.. So, the cysto took place Dec.17, 2010. Urol.Dr. said Low grade, T2---and even showed me photos of it. He recommended RC---whereupon I met w/ the RC surgeon in Phila., PA near my residence. This one specializes in "Robotics". However, no pre. or post Op. chemo or other was even discussed--although I did mention it. My readings have told me that BC, TCC begins over a long period of time---maybe years before in some cases---until the tumor(s) begin to show blood in the urine or can be "felt" thru exams etc. I'm now in "limbo" awaiting ultrasounds to maybe show mestastasis elsewhere. I'm told the lymphs have to be studied only AFTER the Radical removal of my bladder, prostate, etc. SOMETIMES--there's an interrupt in RC---and the lymphs are studied for further eval. Some Ops. are cancelled- during progress-- if severe mets. are found--upon pre-Op. decisions. So, I think---OK--now my life will be totally changed in either case. THIS is a crucial decision for ANYONE to choose. So, now I'm faced w/ insurance cancellation--not due to me---but "others"---and I have to seek alternative funding should I give an OK for RC---if that's now even possible---I don't know. Talk about a "brick wall" & a "hard place". The "profession" can only "stage" or "estimate" progression of this cancer based upon very skimpy data. Simply---not enough is known about it. I think I was "hurried" in being advised for RC because that today is the BEST they know for cure possibilities. ( sometimes known as Gold Standard). BUT!---the worse is that my cond. maybe's metas'd elsewhere!---now I'm faced w/ other problems. My dilemma is now this---IF my average lifespan is but another 14 years (78 for males)----how do I want to spend it?---with aggravating "stomas", chemos and everyday maintenance just to "hope" I'll do 90+?---or do I just spend my years knowing that the cancer will eventually invade my entire body---somehow---and I'll go, hopefully without much pain or suffering for those close to me. No---I don't think I'm a defeatist---I think I'm a realist! I'm not sure of my decisions just yet---but I've read this cancer is very slow---and we've some time to make prudent decisions. If mine was diag. 13 months ago---prior to an Syst.---then verified--what progression took place? Did it start with grade 0?--or when I was born?--- I'm told an RC Op. costs about $500,000 +. Even to forget the costs---there's no guarantees that chemos or other will prevail for us souls---and, considering the ensuing costs of same this, again is a real dilemma for us unfortunate. Yet, I console myself---often knowing about the forever , tragic injuries & body bags coming home from the Middle East helping to preserve my right to vote. Whether 1st, 2nd, Korea or Vietnam wars. I've had 64 years of a wonderful life---those "kids" have little or none. I count my blessings today whenever I see a human in a wheelchair---some even with a "breather" in their noses---just making it to wherever their going---a lot much-much younger than I. Twist---Mortality is something non of us as humans is easy to accept. I only will say prayers---which I'll sincerely do---for your personal dilemma. There are many others here who are doing the same for me. Regards----Dudge.

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