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New here and been reading posts a bit. Just had TURBT surgery to remove tumours on December 29 2015 but cancer is still present “in situ” (where it was 2.5 years ago when first diagnosed).
Had post-op appointment yesterday and a med student came in and queried me for 30 minutes instead of looking up the info on the computer. When I challenged him on some points he admitted he was being lazy and should have been looking up the info. So glad my daughter was with me to calm me down as I have ADHD and Anixety/Panic disorder. The student then goes into a long explanation of why they are going to book me for another BCG cycle and there is no need to do something radical like bladder removal and what this should accomplish.
Then my Urologist (who I am so lucky to have) comes in the room, sits down and says “Richard we need to remove your bladder”. THE EXACT OPPOSITE OF WHAT I HAVE JUST BEEN TOLD! So I explained what had been discussed with the med student and my doctor said “Well yes he is a med student but he should not have said that”.
As of this writing I am so furious and confused. In total I have had 2 BCG cycles and a Furgulation procedure. A CT Scan was performed on December 24 2015 and results showed no sign that the cancer has spread. I feel I need to research other methods of cancer detection in my system before anything else. Any and all suggestions and/or information would be very much appreciated.Hi Richard
Sorry you have a recurrence of CIS. Do you have a copy of your pathology report which will indicate the stage? Due to to CIS being an aggressive form of bladder cancer, usually when it recurs, the doctors normally recommend removal of the bladder. Are you seeing a Uro at a major cancer centre; if not I recommend you get a 2nd opinion at a major cancer centre.
All the best,
JackHi Richard!
Welcome to the site no one wishes they had to belong to. I don’t blame you for being angry. I second Jack’s advice. Get a second opinion and make sure it is from a uro at a major cancer centre. Get a copy of your pathology report from your uro. Jack can help with names of other docs. Bladder Cancer Canada can help with the interpretation of a pathology report. Contact Jack for details on that.
It is of most importance that you have a clear understanding of the stage and grade of the cancer you have as that determines which direction the treatment protocol goes. Radical cystectomy (bladder removal) is a very big surgery so you need to determine whether that is the best route for you to go before actually consenting to the surgery.
If it does appear to be the best choice to eliminate the cancer in your case and you want the surgery done, then you obviously want it done by a surgeon that has experience doing this type of surgery. If doing the surgery you will also have the decision of which diversion to have and that will take some serious discussion with the doc as to the pros and cons for your situation. Take care and let us know how it goes. (((((HUGS)))))
Hi from one Richard to another ! My tumours have been classified as high-grade and I’ve already had a recurrence not eighteen months after the initial TURBT and BCG. Very shortly after the first symptom of the recurrence showed up another resection was performed. When the pathology report finally became available the uro who did the procedure glanced at the report on his computer and just looked up and said “We’re going to have to remove your bladder” and sent me off to see the specialist who would perform this radical procedure. Done and gone, forgotten about. Meanwhile I’m feeling like somebody took a brick in each hand and simultaneously smashed them onto either side of my head and everything is whirling around inside. That’s pretty much what terror of the unknown will do to you.
The next Urologist was completely different. He saw me right away and studied the path report then looked up and told me that the results were so vague that he saw nothing in it that would necessitate immediate radical cystectomy. He really took the time to allay my fears and laid out all the possibilities. We decided to redo the TURBTand get definitive tissue samples . And so far so good. I have two more BCG installations in this series and then a break . We are going after this thing aggressively and who knows?
So get second even third opinions before anything is done. Inform and educate yourself. Be your own advocate and be assertive. It’s your body and your life, not theirs so you have a huge say in matters. If you don’t understand something make the medical staff explain until you do. In the end it’s not about them it’s about you. Take charge .
Keep coming back here. There are a lot of good people who know exactly what you’re going through. We’re here for each other.Another thought; Why was fulguration done instead of a Trans Urethral Resection of Bladder Tumors? Did any samples go off for pathology? And he wants to remove your bladder? There are way too many unknowns yet to support that. Get another urologist before anything else is done. It’s your life.
Dear Lord you are in a scary place. But you are finding out what you are really made of. The rest of us can do it, so can you.Fulgaration was done last summer the BCG in the fall and TUR on December 29 2015. I don’t know why or how or anything. Confused and scared.
Hi Richard,
I can understand being upset and frustrated following conflicting diagnosies. I had a residenting Urology med student visit me TURBT post-op and he was misleading as well.
What is most important are your Pathology Reports. Pathologists look at your Bladder tissue at the cellular level under a microscope. Their diagnosis is what is importatnt. So, first-off, make sure you get copies of you Pathology reports so you can clearly understand what you have.
To help with the “how”, “why” or anything and in order not to get overwhelmed and confused, here are three articles and documents that I feel explain things very well:
1) “Bladder Cancer Basics” — http://urology.ucla.edu/workfiles/Bladder_Cancer/Bladder_Cancer_Basics_for_the_Newly_Diagnosed.pdf2) “Best Practice In Treatment of Nonmuscle Invasice Bladder Cancer” (NMIBC) — A little more medical in nature. But with your Pathology reports together with your Urologist you can evaluate the Risks you are facing. (For example, my Uro and I agreed I was Intermediate Risk). It also covers treatment and consequences of treatment follow-up. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263923/pdf/10.1177_1756287211431976.pdf
3) “Guidelines On Non-Muscle Invasive (Ta, T1, CIS) Bladder Cancer” After a read of 2) and knowing what you have and your Risk, this document explains recommended (European) treatment. http://uroweb.org/wp-content/uploads/04-Non-muscle-Invasive-BC_LR-1.pdf Read it all but focus on pages 11 to 16
For example, based on the above: IF you had, and still have, recurrent CIS (“Carcinoma in Situ”) together with Ta/T1 High Grade Tumor(s), the Risk level is High. CIS is considered High Grade by definition. If BCG treatment is not putting the disease “at bay” and the tumors and CIS are recurring, then Cystectomy (Bladder removal) is usually recommended.
You need to have an informed discussion with your Urologist(s). I hope the 3 documents above help you to be prepared for that informed discussion. It did for me.
HTH and all the best to you Richard
God Bless
DDep
Richard, I sent you a private message last night, but I think I deleted it instead. So in case you did not get it, I am writing here. Just wanted to say that I was treated in Hamilton, when I was diagnosed with Stage 2 BC, three years ago, at age 52 – also over Christmas. So if you are at the McMaster Uro Clinic at St Joe’s, you are in a good place. My uro/surgeon is Dr Shayegan. I am really pleased with my care from first meeting him 3 years ago. If he is not your Dr, then he is a good choice for that 2nd opinion. He is the vice chair of the medical advisory board for Bladder Cancer Canada. I had my bladder removed by him in June 2013, after 3 rounds of chemo, and am now 2.5 years cancer free. Bladder gone, cancer gone. Really happy with my neobladder and my outcome. Hang in there, there are ups and downs, some discouraging appointments and results, and then good ones and progress. Get that path report, as others have said. Feel free to fire away with questions. Anyone on this forum will be glad to share their experiences, myself included.
Richard,
You mentioned that you had a CT scan on 24 December 2015. I would suggest you get a copy of that report if you don’t have it.
The CT scan is used to determine if the Cancer has spread to other areas of the body. I am not sure of any other tests as good as the CT scan. I would think that is what you are looking for.
FYI, I had a CT scan just after my first TURBT and just before they removed the Foley Catheter. The Uro told me that he read the report and let me know that my body was “all clear”. He gave me a copy of the report.
HTH and best wishes
God Bless
DDep
Hi Richard,
In your case I would highly suggest you follow with Jack’s advice (posted shortly after your initial post). If you contact BCC via the phone number at the top of the website, they will very likely be able to provide you contact details for other doctors at a major cancer care centers and /or teaching hospital.
Eddie
Great news that you are seeing Dr Shayegan as he is one of the best! I recommend Richard you make a list of all the questions you have regarding your situation. Dr. Shayegan is known to be extremely patient friendly and he will be able to answer all your concerns and questions. He can explain the various tests that are utilized to see if the cancer has spread outside the bladder.
Keep us posted and all the best,
JackI have my Pathology Report.
DIAGNOSIS
A. Bladder (previous tumour resection site). biopsy:
– Urothelial carcinoma in situ with areas suspicious for invasion to lamina propria
(see comment)B. Bladder (left lateral wall), biopsy:
– Bladder tissue with chronic inflammation and denuded surface urothelium
– Negative for malignancyCOMMENT: Intradepartmental consultation has been obtained.
So now I’ll google…..
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