Frankly is what we want. We are the same way. I sent Cynthia. We are in VA
The nurse just called and wants Toby to come in tomorrow for the doctor to do the scope in the office to see why he's still bleeding. After the first procedure they said it was ok to experience bleeding for 5 or 6 weeks. At 8 weeks when bleeding came back they scoped again and she found more irritation and that's when she did another TURBT and found the CIS. We are now 4 weeks out and she wants to look inside again. Why is the "normal" bleeding not ok at 4 weeks now when it was ok for bleeding at 5-6 weeks before?
Toby is concerned with the number of times the scope is used. stretching the track & making the bladder mad. Is that a concern for you men?
Any thing you folk can think of for us to ask the doctor tomorrow will be helpful. I'm not just directing to Mike - WE appreciate ALL of your comments and help along the way. I think Toby connects to men because they are made like him (imagine lol). I think the ladies put things in a way I relate to so we gain from ALL of your experience.
We go tomorrow, Wed at 2:00. Any thing we should be asking at this point, besides the obvious?
Thanks to everyone here. You have been a caring, special group of people to reach out and help others.
Kathy & Toby
Good. Glad to hear it. I tend to speak frankly and sometimes that doesn't work depending on folks' state of mind at the time.
Send a note thru 'contact us' with your email address and phone number. Do not post that here in the forum. Cynthia will get it to me. Also give her your time zone. I'm mountain time. Over email we can set up time so just get the info to Cynthia.
Oh Lord no Mike, and I'm sorry if I came across offended....Toby even said he would really like to talk with you because you have really been helpful. Is there a way to communicate in conversation privately on here? I didn't take time to look for that info - just wanted help, opinions, info.
The uro will be in the office tomorrow and has our message. She had surgery today. He had the first bleeding and she scoped it in the office, saw a cauliflower thing and removed it. She said it was on the surface and a very normal type of 'cancer'. She put liquid chemo in and said to come back in 3 months.
8 weeks later bleeding came back, went to her office for a scope and she didn't know what it was but there were 2 'scab' like things which she let me see through the scope. She did TURB 2 on the 4th day. She said it didn't look like cancer but it was UNUSUAL. The path report came back as CIS. That was 4 weeks ago. She had burned the bladder lining or scraped it - I forget the wording.
Now at 4 weeks he's bleeding again. It stopped for several days then back again. We know he can't have his first treatment this Wed.
I agree - we need a referal ASAP. This needs to be handed over now. his urgency is awful. We need to get to the bottom of it. I am sorry if I came across as rude - the written word is hard. I'm just grateful for you and all others here.
If new tumors are popping up that fast (you may want to just double check that with her) then it is certainly time to look into a 2nd opinion at a major bladder cancer center (e.g. MD Anderson, Memorial Sloan, etc.).
If these are all new cancerous tumors popping up and bleeding that fast you need someone else at a top bladder cancer center getting involved. Probably a good idea at this point even if they are not new tumors.
I can tell you my urologist could not find my bladder tumor when I had a recurrence. He looked in the office and again in the hospital under anesthesia. I was getting intermittent blood and he couldn't find it. When I went to a bladder cancer specialist, he saw it within five seconds. In my case, it did not mean it was new. It meant the original urologist didn't see it.
Your case could be completely different but if it is that aggressive, I would raise the flag now and start pushing the current urologist for more answers and for a referral to a bladder cancer specialist. When my urologist referred me to one it changed everything.
yeah, we don't look at it like we probably should. We think of it like - well - like cancer. It growns and depending on the stage/aggressiveness then time standing still matters.
After the first TURBT 8 "pages" ago he experienced the bleeding. He was to go back in 3 months for a follow up scope in the office (and liquid chemo was put in the bladder on the first TURBT). 8 weeks later he's bleeding, we go back then verses waiting 3 months. She scopes and there is more/different cancer. So we relate bleeding after 3 weeks or so as more cancer.
Good question. I keep forgetting that people don't realize that even "aggressive" bladder cancer isn't racing around the bladder or the body like ice crystals forming in water.
Waiting couple/few months for BCG treatments is not a big problem.
If we were talking muscle invasive bladder cancer then speed is more of the essence but in that case we would be talking about speed of removing the bladder, not BCG treatment.
Hopefully, the doctor has already explained this to you both.
Most of us have bladder cancer for quite some time before it is ever even discovered to begin with.
The bleeding will stop. If it keeps on for too long then the uro will likely want to do another cystoscopy just to see what is going on and to be sure it is coming from the location where the TURBT was taken.