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Re:End Stage Symptoms?
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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15 Replies
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I know about parents being private. They feel their private lives are “State Secrets” for God’s sake! LOL
But, cancer is a whole other story. When he goes to the Dr. alone, he is just as shocked and dismayed as anyone. He may forget a question or an option he needs to consider.As for the blood, I had blood in my urin intermittently for about 6 months before I went in and had a Dr. look. So don’t rush to a negative conclusion. I had my Bladder taken out 4 years ago and every 3 months(now 6 months) they check to see if I am still on the right track.
Keep on doing what you are doing. You keep your dad on track… And you will have him around for a long time.
George
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]
I’m the youngest of four boys. I stayed home except for a year I went away to trade school. I live next door to my parents and my next oldest brother, wife and children live a block away in my late Grandfather’s house. I’m usually the first to know what’s going on. Mom is good about keeping me informed. He hasn’t wanted anyone going with him to the doctors office. My parents are the most private people I’ve ever known. They think Facebook is absurd. lol They’re old school. Dad will be 75 the 23rd of this month. My Dad is my best friend.
Thank you all so much.
When I had my recurrence (two years after my first round of bladder cancer) I was getting big clumpy blood clots and sometimes lots and lots of blood. Other times, not so much. Mine had just barely become muscle invasive at that point.
Odds are, yes, the cancer is back. But that is all it means so far. Thanks for posting the progress. The amount of blood isn’t really a huge indicator of anything other than there is bleeding. The tests and the look are going to tell the story he and you need to know.
My money is on “it’s not too late but he needs to get this done this time and get the thing out”. That’s what I’m hoping for. Unless somebody proves otherwise, that is the plan. :)
He knows you are there for him. That means a lot. Facing this together with a loved one is way easier. Talk… Real men do talk! :) Let him know he can tell you anything and not to worry about you. You’d be surprised how many of us worry about what to say to others so we don’t freak them out.
Keep us posted!
Thanks!
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Well, Dad went last week to the doctor and they have him going back tomorrow and Tuesday for test. Same tests they did back in February I believe. A skeletal scan and to check his lungs. Then he goes back to the cancer doctor on the 29th to find out what’s going to happen.
The blood in his urine is still coming daily and though out the day. This afternoon he had me go in and flush the toilet after he had gone and there was quite a bit of blood. I told him it didn’t look very dark but he said it does when it comes out and then dilutes in the toilet water. His moral is pretty low. He says he’s still not in any pain when going to the bathroom or otherwise. Says he feels alright.
Should he be drinking more fluids to offset the bleeding?
Mike, really appreciate yours and everyone else’s concern. I may in deed put him in touch with you at some point. He told me today he was ready to get it out. I think right now we’re all just praying they take it out and that it hasn’t spread.
please keep me in your circle also he had his bladder out last march and last august stage 4 i had 32 years and no secrets he was given 6 to 9 months andattended his sons weddig on nov 26th i will 6 months tomorrow hes gone thanks for the kind words keep n touch
thanksfor your kind word he had his bladdder out last march but was doing ok and in august of last yearit was stage 4 chemo did not work for him i had 32 years and wanted more
Yes CLB
Please keep us in the info circle. We are a determined bunch and we “have been there” Your dad is a valuable commodity and is worth keeping.
I fhe is going to the Dr., perhaps you could go along. Bring a notebook and jot down questions before you go. Also jot down thoughts as you are there.
I remember the Dr. discussion being a white hot blurr as the news of treatment and cancer were discussed.
As for being “a man” I have this to say “Being a man is so much more than being a sexual Addonis” Just ask my wife. She says I am a better man since I had cancer, than before.
She also thinks I am living life a bit fuller than before cancer Hmmmmmmmmmmmmmmmmmmmmmm.CLB. You have done a great thing for your father. You probably saved his life!
There are lots of hero’s in this cancer thing……. and they aren’t all cancer patients. Your dad owes you a big thanks. Well, maybe a knowing look and a shared beer.George
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]
Thanks for the kudos folks. I have to tell you though that the BIGGEST kudo for me is when I saw that his dad was going to go see the doctor again! It’s all about his dad.
CLB: Keep us in the loop. As you can see, George had his bladder out back in 2008 also and that’s him in his race car in the picture. Having a replacement bladder (or even an ileal conduit) does NOT slow us down. Your dad needs to know that!
Best,
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
CLB6
Your father has met his match in Mike. He refuses to let anyone Give up.Way to Go Mike! YOU deserve the Kudos. “Never Give up!”
Your father has made a great decision and, hopefully, will become a future survivor and advocate on this site.
Thank you for taking the initiative and getting on this site and asking the BIG questions. I am sure there are other lurkers here that just haven’t decided to take that step yet. You may have saved anothers life by caring for your father!
Good luck as you journey through this path.
As you can tell. There are many here who have followed the same route and will freely give their advice to make your journey a better one than they had
George
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]
CLB6,
If you wanted to use the “Contact Us” form to get information privately to me about having a chat with your dad, the link is: http://bladdercancersupport.org/bladder-cancer-help/bladder-cancer-site-help/bladder-cancer-cus.html
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I am happy about the way this is turning out. Way to go, Mike, for posting the right words for CLB to share with his father. Way to go, CLB, for having the conversation with your dad and pushing him in the right direction. Hope and pray that things go well with your dad’s doctor’s visit.
Anita
Anita
Forum Moderator
Caregiver
You don’t know how glad I am to read your message about your dad!!!
Of course, it likely doesn’t compare to how glad YOU were when he told you he changed his position.
Facing this thing head on and dealing with it is WAY better than just letting it take you out without doing anything. It is not a pretty way to die.
If your dad would like to talk to me on the phone, I’m sure we could figure something out. Maybe you can send a note through the “contact us” section and they can give me his number or your email and you and I can set something up offline. If he wants to email me privately, I’m open to that as well.
We don’t want to post phone numbers or email on this forum because people troll these areas looking for people to spam and scam. He has to be worried at this point and I’m guessing it is NOT too late. I’m not a doctor but I’m guessing he’s just recently had his recurrence and that it is time to do something about it.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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.
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
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
