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Just diagnosed with T2 muscle invasive bladder tumor
Still trying to comprehend everything that I was hit with. The urologist wants to remove the bladder and gave me several options plus chemotherapy. Would like to hear from people that went through this and their experience with living without a bladder and what procedure they had.Thanks in advance trying to decide which way to go.
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9 Replies
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Update, after 3 months of chemo treatments I had a cystectomy on 10 January and a second surgery on 20 January to correct a problem from the first surgery. While recovering back in the hospital with bleeding from my rectum due to blood thinner and diverticulitis. Just started immunity therapy infusion this week. the drug is OPDIVO and the list of side effects is pretty long. Curios if anyone has had experince with this drug and the immunity treatment in general. Wondering if this will ever end.
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If your cancer has moved outside the bladder, it is no longer muscle invasive. Your best course is a cystectomy. This is serious, life decision making! There really is no other way to look at this. For peace of mind you may want to consider a second opinion or may want to check about certain treatment trials but, you want to get a move on.
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. -
My bladder cancer has moved outside the bladder into the prostatic urethra and may be muscle invasive. I will find out in a few days. What treatments are available before diversions are discussed? I’ve had BCG and read about radiation and chemo. What are the pros and cons of these treatments? Any thoughts?
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I am not a good reference as I haven’t had to have a diversion. The consensus of most posters is they are happy with whatever diversion they eventually pick. You do have some time research further and hopefully hear from more people.
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. -
Don’t know when I will have to make a decision, the Urologist wants to remove the bladder and gave me the different procedures that he could do. He referred me to an Oncologist who immediately started chemo treatment. I am getting Cisplatin and Gemzar. I canceled the follow-up appointment with the Urologist because it was on the same day that I was scheduled for chemo. I am going to take the full course of chemo and see what the results are from that. There is no doubt that the Urologist will want to remove the bladder because surgery is what he does and if I have to do that I am leaning towards the ileal conduit (loop). I am 79 and in fairly good health up to this point and that procedure is the least invasive but don’t look forward to having to wear a bag. That is why I was hoping to hear from someone on this forum about their experience after having their bladder removed.
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Here is a quick summary from a very good bladder hospital of the 3 main diversions. https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction–diversionhttps://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction–diversion
The key is having a surgeon that does at least 25+ of these a year of whichever they are best at.
Also, I am attaching a questionaire some made years ago with many questions. Some apply, some don’t.
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 see an oncologist next week. After having intermittent gross hematuria since March of 2020 and seeing 5 different docs who either said it was my prostate or I was passing a stone or it was because of my blood thinner, one doc told me sometimes the cause of bleeding is never found, I started bleeding heavily on a Sunday and developed huge clots in my bladder which obstructed the outlet. I couldn’t pee and went to the ER then Monday I saw a new urologist who did a cystoscopy to remove the clots and that was when he actually saw my tumor. It had been missed on the cysto I’d had 4 months earlier just as it hadn’t been seen on the 6 pelvic CTs and 2 ultrasounds in the last almost 2 1/2 years. The biopsy showed T1 high grade urothelial with 50% signet ring cells. My TURBT was about 3 weeks later, that’s when the muscle invasion was found along with “abundant” carcinoma in situ.
When do you have to decide on having your bladder removed? Is it after the chemo or are they saying you need the cystectomy regardless of if you respond to the chemo or not? What kind of chemo are you having… what drugs and is it intravesical or intravenous? Is your urologist doing it or are you seeing an oncologist? Are you being treated at a large cancer center where they have lots of experience with reconstruction after cystectomies? My urologist says I’m too old at 73 to have a neobladder but I think I’m in pretty good shape other than age. When I asked him if he does neobladders he said “I have done them but….” so if my bladder comes out, first I need to talk with someone who doesn’t plan my treatment around his surgical abilities. The closest city big enough to have a large cancer center is about 5 hours away, I think I’ll try to see someone there. I’ll talk to the oncologist about it on Thursday.
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I started Chemo this week but might have to make a decision on which way to go if I have to have my bladder removed.
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Hello Rockwood. I’m in the same boat. It doesn’t look like this forum is busy enough to do us any good which is too bad. I wish you well.
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