End Stage bladder cancer

11 years 7 months ago #42842 by CLB6
Replied by CLB6 on topic End Stage bladder cancer
Thank you Mike and Cynthia. I'm happy to say after a discussion tonight my Dad is going to go see his cancer doctor again this Wednesday. I just want to thank you so much for your comments. Mike, I read you're post to my father and I think that he's realizing that he's not ready to leave us yet. He's so afraid of not being a 'man'. He's a very stubborn and hard working man. He's a mans man. He still sees himself as a thirty year old father and husband. I just hope and pray he hasn't waited too long.

Again, thank you. I'm sure I'll probably be back here again but god bless you folks and I hope the best for everyone dealing with this and any other form of cancer.

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11 years 7 months ago - 11 years 7 months ago #42839 by Cynthia
Replied by Cynthia on topic End Stage bladder cancer
We felt that your question deserved it own thread.

Mike is right in all he said. If it would help we have men here who have had their bladder removed who live full ives and I am someone would be happy to talk to him if that is still an option for him.

If your father still refuses any medical treatment you should get information on hospice. Almost every community has one they do not give treatment but they do help with care and providing comfort as things progress.

None of us can tell you exactly what your fathers path will be but we can offer to be here for you if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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11 years 7 months ago #42838 by mmc
Replied by mmc on topic End Stage bladder cancer
This should probably be it's own thread.

At this point, it could be that he changes his mind and gets his bladder out. I had mine out almost four years ago and I'm doing fine and have been cancer free ever since having it removed. Others here have had their bladders out for 8 years or more.

Not sure why he felt it wasn't worth it but I also don't know what was diagnosed or if it had already metastasized.

There will be considerable pain before he dies so if he isn't really having pain now then he's likely not even close.

It spreads differently but it typically will spread to the bones, lungs, and/or brain.

Maybe you should ask him. He probably asked a few questions of the doctor and has some answers. Of course, you know him better than anyone else so maybe he wouldn't have asked the doctor or done any research. Still, seems like it would be worth you asking him.

Having blood in the urine doesn't necessarily mean it is spreading. Just means that it is there in the bladder and the cells have been damaged enough by cancer that it causes bleeding. Often, that is the first sign any of us had that gave us a clue we had bladder cancer. First time for that for me was in 2006. However, I had the tumor removed and was treated. It came back so I got my bladder removed.

If he was told to get his out back in February, they likely removed whatever cancer was there and determined that it was at least T2 (muscle invasive). T3 is deep muscle invasive and t4 is that it has invaded all the way through the bladder into the abdomen. Since they didn't tell him chemo and just said to remove it, he was likely T2 or T3.

Chances are that the cancer has now come back. That would be indicated by the return of the blood. When mine was first treated, they got it all and it didn't come back for two years.

The reason they wanted to remove it is because, if it hasn't spread at all, then removing the bladder removes the chance of spread. Sometimes it has already spread (once it gets muscle invasive) but it is too microscopic to even find. That is called micro mets.

The thing is, he may be in a position today to change his mind about having it removed and be able to be cancer free for years and years to come. The only one that would know that would be a bladder cancer specialist. Of your your dad may know more but until you know what he does, not much to do.

Sure seems like "Gee dad, I'd kind of like to know what the deal is and what to expect if this darn cancer is going kill you" would be a reasonable question to ask him.

Good luck!
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 7 months ago #42837 by CLB6
End Stage bladder cancer was created by CLB6
My father had a little blood in his urine on last Christmas morning. In February he was diagnosed with bladder cancer. He is 74 years old and has survived throat cancer in his late fifties. He had a spot removed from his tongue about six years ago but other that that he's been good till this. They wanted to remove his bladder in March and he wouldn't let them. He also opted to let it go untreated. If they told him how long he had he didn't share it with us. Since then he has been very active and living well. Up until last week he very seldom had any discharge in his urine but a week ago it started to come daily. A few times it's been pretty bad and after this morning he is noticeably more concerned but is resolved to let it run it's coarse and refuses to seek anymore medical advice.

I put in a call to his GP to call me and he has not returned my call. I am not a well educated man but I wish there was someone I could talk to who could tell me what to expect. I also am looking for some idea of what is going on with my father. All I find on the internet is treatment options, nothing about the advanced stages of this disease. He has no pain when urinating for the most part his urine has just been pinkish not dark. What's next??

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