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Scared
Hello forgive me if I’m writing in the wrong place. Today came a shock to me-I was told after my cytoscopy that I have a possible 1cm superficial tumor. Dr. thought it was malignant sent out to pathology. I’m 46 years never smoked and just lost right now. My wife and I are probably going to go to Mayo Clinic to get whatever procedure needs to be done. The Dr. Who did the cystoscope told me they would do a scraping (sorry not sure name of procedure) under spinal… So I guess I’ll be awake? I guess what I’m asking is for some help (crying right now) on what , where, & how……. Love, Jim
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26 Replies
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I am reading along. My husband was diagnosed with supervicial bladder cancer in 2012. The first uro he saw was Trockman. He is not a bladder cancer specialist. He does not use mitomycin after doing a TURBT. We left Trockman after one visit and went to Northwestern. The experience there was like night and day. We see Dr. james Kozlowski, who is a uro oncologist. He is brilliant. He is thorough. He teaches there as well. Dr. kundzu is also excellent as is Dr. Catalona. This is serious stuff and you need the best doc you can find. In my humble opinion, you do not need Mayo. Get yourself to Northwestern. If you already let Trockman do the TURB.t, i would still seek a second opinion from one of the uros at Northwestern.
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Jim
I’m sorry that I didn’t jump in here earlier. The questions you have been asking are all the same questions we have been asking since we got “the news”
As you probably know by now, the people here are open to anything.
Being scared is absolutely normal and you express everything very well.
As you start your journey to being cancer free, I cannot help but tell you that the people here are all survivors and soon….. you will be a survivor and you can tell the next generation of users that they will get through this as we did.
My advice is;
Get the best Dr you can. Make sure he is a bladder specialist. Make sure he has done a TON of procedures (almost like an assembly line worker, he’s seen so much)
Then he will have seen everything and there are no surprises to him.
Judging by your posts here and the reply’s you have had here, I would say you are one of the lucky ones that caught it early and your prognosis is good for a full life as a survivor.George
I have to admit that we ALL have anxiety inside when the Dr says the c word. You are perfectly normal.
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Smaller is of course better. But grade and stage are the most important.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Sorry another question, does the size of the mass relevant? Sounds like it doesn’t …..
Jim,
If it were me – based on what I understand from your posts…
Any doctor that let me get this far WITHOUT having had a CT with and without contrast would be off of my team.
Maybe its the docs, or maybe I don’t understand the full story, but I would go with Mayo.
Most important, is that you move ahead with someone and get a fully informed diagnosis which will have to include a TURBT of the 3 cm mass. After that, you may have some real serious decisions to make regarding your future health and treatment.
Best, Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Mayo, is a given for excellence. Some others will know more about Chicagoland but, you want a center and doctor that specializes in bladder, not as a side line with prostate issues. I looked up my BCBS centers that they recommend (and I do see potential conflicts per possible $$$ contracts): Loyola University Medical Center, Cardinal Bernardin Cancer Center, Maywood. Northwestern Memorial Comprehensive Cancer Center of Northwestern Hospital, Robert H. Lurie, Chicago. University of Chicago Medical Center, Chicago. NorthShore University HealthSystem (formerly Evanston Northwestern Healthcare), Evanston.
I remember other posters speaking highly of Northwestern and Chicago. For my $$$ if your insurance allows I’d stick to those. I’d want the best!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Well today after an awful nights rest, I made an appointment to talk to my primary doctor. I know I need to get the TURBT done but having seconds thoughts if I should just get it done locally or still go to Mayo? As I’ve said previously my wife is a HUGE Mayo fan, as she said they were written up in US News & Report as #1 in Urology. But not sure if this is all true? Reason I’m second guessing is since we are in the Chicagoland suburbs we have access to quality healthcare, in fact I live very close to Northwestern-Central DuPage Hospital and could see Dr. Brett Trockman – the original person who did the biopsy. Or I could see Dr. Stephen Boorjian at Mayo who has excellent credentials, but will have to be gone from my boys for 3 days, encounter hotel, and dining bills. As you know Mayo can be a very daunting place. I guess I don’t want to make the wrong decision. I’m sure you all have been in my place. And I would appreciate your insight. I know my wife would be saying to me do t get to many chiefs, but I fell that you who belong to this American cancer society know as the individual dealing with this would be kind enough with your perspective. Thanks and God bless,
Jim,
Procedures vary a bit with different docs, different patients, and the specifics. That said, let me add a little bit to the mix.
An INITAL screening and work up includes taking a history, a cystoscope exam and CT scans with and without contrast. These allow the doc to compare the complaint with what can be SEEN on the surface of the bladder and other organs AND deeper into the tissues.
THEN, the decision to examine further can be made.
If something suspicious (a tumor or growth) is found or suspected, a biopsy is needed to determine what IT is, and if cancerous, what is the grade and the stage. The biopsy material goes to the pathologist for that determination. The process of obtaining the material the TUR or TURBT – TransUurethral Resection of Bladder Tumor.
IF the pathologist rates a tumor as cancerous, s/he will examine the sample to see if the whole tumor was removed. In other words, was the tumor surrounded by normal cells (clean margins) OR is it likely that part of the tumor was left behind ? If there is any question, a second TURBT will take place to remove a bit more of the surrounding tissue and get the whole tumor.
Only at this point – with a full understanding of the situation – can further treatment decisions be made. It appears that you are just now about to reach this point.
As to your 6 questions, my comments do not disagree with Sara Anne, but do differ slightly. Again, ” Procedures vary a bit with different docs, different patients, and the specifics” , and my experiences differ a bit. It appears to me that…
1. You do not yet seem to have had a full initial workup.
2. Only the superficial sample was sent to path. The tumor shown on CT has not been examined.
3. I have been offered a spinal for 3 TUR procedures by 2 different anesthesiologists. I prefer a general to a spinal, so I decline. Obviously, with some docs it is an option. Talk to your doc.
4. After 3 of the last 4 TUR procedures I have had a catheter overnight. It depends on the doc, and how much residual bleeding is anticipated. I have “clogged” from blood clots – unable to urinate, which is NOT fun at all – and had the 3 AM run to ER to have the bladder clots pumped out. Trust the doc to decide. We all hate being cathed. (or are grateful when it is necessary). It is funny how quickly our perspective on things urological changes after diagnosis.
5. The upcoming TURBT, I assume, will provide initial info about the tumor found on CT, and may be intended to learn further about the papillary tumors. Ask the doc. Expect TURBTs on a regular basis as part of ongoing monitoring and prevention.
6. Grade and Stage are important. Size, for a change, is just a number.Best, Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
I just had my turb last week and awaiting results on biopsy. I let a local urologist perform this, and hope I didn’t make a mistake. I chose UT Southwestern Medical in Dallas to go next on June 20th, with Mayo and MD Anderson as backups. I have so much anxiety so I understand your concerns.. This forum has helped me tremendously and glad you also found it. I went in at 6:30 am and was home by 1:00 pm. The procedure only lasted 45 minutes and the doctor said he got all the tumor. I did not have to have a catheter. I mostly felt pressure and small bit of cramping, but no real pain. I got up the next morning and carried on with my work and house chores and have had no problems. I have been careful not to lift anything over 10 pounds. I just wanted to set your mind at ease on the procedure and hope the best for you. You are in my thoughts and prayers..
Janice
Blood in urine 4/17/2016
Ultrasound, CT Scan, TURBT
Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018
Anxiety? Yup, I had it with my 1st surgery. Spinals present more issues then a general. All I can tell you is the past 10 years most issues have been resolved while nothing in life is guaranteed-like crossing the street and getting hit by a bus. The one day at a time cliche is appropro. You will get past this and someday responding to a forum like this helping someone else!
Not that this idea will necessarily help your situation but, I learned to totally focus on the fact that (repair of my hernias or ligaments or simply getting rid of my cancer) once done I will be better-maybe a form of self hypnosis? I dunno, just grasping at straws trying to help.You will get past it!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thanks Sara Anne.. For your kindness and understanding.
I can understand how you feel….this is all so new. We were all where you are once.
I will try to answer your question on the biopsy. The purpose of the TURB is, of course, to do a biopsy but also to remove as much of the tumor as possible. You don’t want a tumor sitting there seeding other tumors elsewhere. Also, the bladder lining is very susceptible to tumors. One of the dirty little secrets about bladder cancer is that it tends to return. Apparently, once the surface of the bladder becomes “unstable” it if more likely to form new tumors. Many of us had more than one tumor when we were first diagnosed. Papillary tumors are like little mushrooms growing up out of the lining and CIS (carcinoma in situ) is like a rash over the lining of the bladder. It is extremely important that as much of the tumors as possible be removed, and that tissue from all sites be examined by a pathologist.
Because of the possibility of the cancer returning, you will probably be put on the usual schedule of cystoscopy exams every three months for about 2 years, then every 6 months until 5 years have passed, and then every year “forever.”
Please be assured that most bladder cancers, when caught early and treated appropriately, do not progress. Many of us have been where you are and are doing FINE! I am now over 8 (EIGHT!) years out and doing great. The odds are very much that you will be fine also.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Ok more questions, sorry just a “ball of nerves.” I’ve suffered for years with anxiety. And never had surgery, only tubes put in my years when I was little. I remember they put me to sleep still remember being dizzy and a loss of control. But people who know me would never know I suffer from anxiety’s. So even though I’ve read that you can get a spinal, most do a TURBT via general anesthesia? FUrthermore, I’m still confused isn’t the biopsy a good indicator of what is the tumor even though they didn’t take out the tumor(see my earlier post). Sorry for babbling on…. I’m just thankful and grateful for support…. Though my wife is worried I’m writing this… Thanks again, Jim
To add to the discussion. Sara Anne has done an admirable job summarizing. A real talent. I just want to add I was in your shoes 8 years ago and stronger and better person for it. You are on the way to answers and beating this. I am adding comments to one of your concerns of anesthesia. I too had concern because of some family history but, after 5 surgeries (2 hernias, 2 TURBs, 1 ligament tear in my wrist all about 1 hour) the guys doing it have been real pros. Mayo will be on top of it!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I love questions with easy answers! The answer is: It all depends!
Seriously, is does depend on how much time the uro needs to remove as much of the tumor as possible and get really good samples to send to the pathologist, and that does depend on whatever he encounters when he actually gets inside the bladder.
In my case (I have had two TURBS) I went into the hospital outpatient surgery unit about 8 a.m. and was able to have a (groggy) lunch on the way home. I did not have a catheter. Occasionally I have known of people who did stay one night in the hospital.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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