More bad news
Pat
Comments
-
Second and third opinions
Second and third opinions should be mandatory.
I would locate specialists elsewhere, and make the trip. You don't
-have to- make a decision based solely on that doctor's -opinion-.
Take your time, relax, and get other opinions; weigh -all- your options
before making a decision.
You'll be fine, just take your time.0 -
wait a whileJohn23 said:Second and third opinions
Second and third opinions should be mandatory.
I would locate specialists elsewhere, and make the trip. You don't
-have to- make a decision based solely on that doctor's -opinion-.
Take your time, relax, and get other opinions; weigh -all- your options
before making a decision.
You'll be fine, just take your time.
I would start taking resveratrol with a purpose, probably 1 gram per day, I would monitor my water intake, don't take in an ounce of fluid more than you need (don't dehydrate yourself). Follow this for a week or two and see if your numbers improve. If you live a clean lifestyle 80% of one kidney could do, but I don't know. Currently, it sounds as though you have a combined 1 good kidney. If you get something done, look into RFA or gamma knife first.0 -
Why a decision by Monday?
Did your uroligist say why you needed to make the decision by Monday? It seems like you need some time to get a second opinion on all this. I would ask uroligist what is the worst that will happen if you take a week to try to get another opinion and explore other options.
I have no experience with this type of problem but it sounds like the elimination from the kidney is the problem since 2 out of 3 options are for alternate drainage. I hope your uroligist gave you much more info on the exact nature of the problem than you have written in your post.
Hang in there Pat, we are all pulling for you, and I am sure that the folks here will be hunting for more info for you.
Prayers and Hugs...
Marie0 -
Pat ...I don't know anythingLovekitties said:Why a decision by Monday?
Did your uroligist say why you needed to make the decision by Monday? It seems like you need some time to get a second opinion on all this. I would ask uroligist what is the worst that will happen if you take a week to try to get another opinion and explore other options.
I have no experience with this type of problem but it sounds like the elimination from the kidney is the problem since 2 out of 3 options are for alternate drainage. I hope your uroligist gave you much more info on the exact nature of the problem than you have written in your post.
Hang in there Pat, we are all pulling for you, and I am sure that the folks here will be hunting for more info for you.
Prayers and Hugs...
Marie
Pat ...I don't know anything about this....so just sending a hug...for sure thinking about you and definitely wishing the best..
mags0 -
Kidney Cancer Board
There was one post from a woman whose husband had colon cancer,and now has kidney cancer.
Don't Really Know Which Discussion Group I Belong In 2 12/11/2009 by moomaus 12/16/2009
by moomaus
I could not find any followup posts so don't know what has happened in the month since posting, or if they found for sure it was residual from cc or was a new cancer.
You might want to read it and if it is similar to what you are experiencing, see if you can contact the poster.
Marie0 -
I get a second opinion
Hi Pat... Why the rush that he needs to on Monday? I'd get a second opinion, Also I like the idea of looking on the kidney cancer board to see if anybody knows what to do or who to contact as far as a doctors go. Things aret getting worse, you just need to look around for a better doc with some more options and choices. It just like work where you find the best and find somebody you can work with. Welcome to your new job!! LOL
PM me anytime
Brooks0 -
Kidneys
Gosh, I really don't have a clue. From reading your post, even if you go with the option they want, what will they be doing to treat the cancer. If they give you options to treat the cancer but you must go with option 3, then you have your answer. If they are not going to treat the cancer, than what are their plans? Have they told you how advanced the cancer is and what they can do to help you? If memory serves, your bladder is also involved.
Gosh my friend, I feel so bad for you and your family right now. You are probably researaching like crazy right now but if I run into anything, I'll certainly pass it along.
Take care - Tina0 -
Hey Pat
I don't know nuttin
Hey Pat
I don't know nuttin about what you are posting about, but have a lot of questions. Has the cancer gone into the kidneys or are they shutting down (sorry not sure of the medical terms here) due to the cancer in other places? It sounds like the procedure he wants to do, at least 2 of them, is to keep the kidneys functioning. Which would be important, eh?
Reading back over some of your past posts, you have a very rare form of colon cancer, one that is very aggressive, right? Your current oncologist isn't wanting to proceed with any treatment, right? Did I read somewhere that you were going to go to Lisa's doctor? or MD Anderson? I think agressively approaching 2nd and 3rd opinions, taking into consideration that time is a factor as well- that definitely you should be doing that. But the kidney thing- I guess I want to know what his hurry is? Keeping the kidneys up and running well is pretty important, so I am not sure you want to delay acting on that too much. He made it sound like you could wait, especially if you chose option number one. People live with one kidney- but if the good one is at 80 percent- is it going to further decrease?
See what I mean by lots of questions? lol0 -
PatPatteee said:Hey Pat
I don't know nuttin
Hey Pat
I don't know nuttin about what you are posting about, but have a lot of questions. Has the cancer gone into the kidneys or are they shutting down (sorry not sure of the medical terms here) due to the cancer in other places? It sounds like the procedure he wants to do, at least 2 of them, is to keep the kidneys functioning. Which would be important, eh? Reading back over some of your past posts, you have a very rare form of colon cancer, one that is very aggressive, right? Your current oncologist isn't wanting to proceed with any treatment, right? Did I read somewhere that you were going to go to Lisa's doctor? or MD Anderson? I think agressively approaching 2nd and 3rd opinions, taking into consideration that time is a factor as well- that definitely you should be doing that. But the kidney thing- I guess I want to know what his hurry is? Keeping the kidneys up and running well is pretty important, so I am not sure you want to delay acting on that too much. He made it sound like you could wait, especially if you chose option number one. People live with one kidney- but if the good one is at 80 percent- is it going to further decrease?
See what I mean by lots of questions? lol
just wanted to say I am sorry for this news. I do think the suggestions of doing some inquiring over at the kidney board is a good one. Praying for good options and better health for you.
Blessings,
Joanne0 -
Question
Hey, Pat.
Is the idea that the kidney that is the worst will die, and then the other kidney will function better? If so, I would opt for letting the bad one die. I say this because I've lived all my life with only 1 functioning kidney. As long as you treat the one with some care (no excessive drinking, watch your blood pressure), you can get along fine with just the one. I'd ask the doctor the reasoning for all this.
*hugs*
Gail0 -
Let me explain this a littleLovekitties said:Why a decision by Monday?
Did your uroligist say why you needed to make the decision by Monday? It seems like you need some time to get a second opinion on all this. I would ask uroligist what is the worst that will happen if you take a week to try to get another opinion and explore other options.
I have no experience with this type of problem but it sounds like the elimination from the kidney is the problem since 2 out of 3 options are for alternate drainage. I hope your uroligist gave you much more info on the exact nature of the problem than you have written in your post.
Hang in there Pat, we are all pulling for you, and I am sure that the folks here will be hunting for more info for you.
Prayers and Hugs...
Marie
Let me explain this a little better. When my dr. called he told me that I need to make a choise fast. the cancer has not invaded my kidneys as of yet. It is in my right ureter at the bladder and the ureter is blocked. He said that I needed to do the surgery before that kidney shuts down and die's. I don't know how much time I have before that happens. When he gave me his choices after he was done talking and I told him I wanted to think about what to do he said he already had me on the docket to come in monday morning for the procedure. So I am thinking that he already made his choice of what he wants to do. I fell that I have wasted my time for the last 2 years with this hospital and all the Dr's that I have been dealing with. It just seems that I don't have choices even though they give them to me when it gets right down to it they have already decided what they want to do. When I ask them about doing different things they always tell me that thats all they can do. Just like the blood clot that is hanging on my port, they put me on blood thinners and told me there was nothing else they could do to remove it. I find that this day and age that there can't be any other things they can do. So I am walking around on egg shells worried that it might fall off and they tell me that if it does fall off it will more than likley kill me. No one at that hospital has given me any ideas of what else I can do. I really don't understand why this is happening to me This is one of the top hospital and cancer treatment centers in the country.(Barnes Jewish Hospital / Siteman Cancer Center) here in St louis I am so pissed right now about everything that is going on even when myself or Carrie ask questions we always walk out still not understanding what was said or what just happened. I was hopeing to see Dr Cantrell in Nashville next week but if my Kidneys are not working right he might not see me. I am thinking that I might go to Nashville anyway and find a new set of Dr's at Vanderbuilt, Maybe that is what I need to do. I am sorry that I am jumping all over the place trying to tell you all what is going on but I just can;t think straight right now. Carrie had to leave for awhile tonight because she was so upset, when she left she was crying and could'nt even talk to me. This whole thing I think is got her more upset than me. So now I am worried about her. There is so much more I could tell you all but as you can see I am not very good at typing.
Pat0 -
Roller coasterkapper48 said:Let me explain this a little
Let me explain this a little better. When my dr. called he told me that I need to make a choise fast. the cancer has not invaded my kidneys as of yet. It is in my right ureter at the bladder and the ureter is blocked. He said that I needed to do the surgery before that kidney shuts down and die's. I don't know how much time I have before that happens. When he gave me his choices after he was done talking and I told him I wanted to think about what to do he said he already had me on the docket to come in monday morning for the procedure. So I am thinking that he already made his choice of what he wants to do. I fell that I have wasted my time for the last 2 years with this hospital and all the Dr's that I have been dealing with. It just seems that I don't have choices even though they give them to me when it gets right down to it they have already decided what they want to do. When I ask them about doing different things they always tell me that thats all they can do. Just like the blood clot that is hanging on my port, they put me on blood thinners and told me there was nothing else they could do to remove it. I find that this day and age that there can't be any other things they can do. So I am walking around on egg shells worried that it might fall off and they tell me that if it does fall off it will more than likley kill me. No one at that hospital has given me any ideas of what else I can do. I really don't understand why this is happening to me This is one of the top hospital and cancer treatment centers in the country.(Barnes Jewish Hospital / Siteman Cancer Center) here in St louis I am so pissed right now about everything that is going on even when myself or Carrie ask questions we always walk out still not understanding what was said or what just happened. I was hopeing to see Dr Cantrell in Nashville next week but if my Kidneys are not working right he might not see me. I am thinking that I might go to Nashville anyway and find a new set of Dr's at Vanderbuilt, Maybe that is what I need to do. I am sorry that I am jumping all over the place trying to tell you all what is going on but I just can;t think straight right now. Carrie had to leave for awhile tonight because she was so upset, when she left she was crying and could'nt even talk to me. This whole thing I think is got her more upset than me. So now I am worried about her. There is so much more I could tell you all but as you can see I am not very good at typing.
Pat
Re:
"When my dr. called he told me that I need to make a choise fast.
the cancer has not invaded my kidneys as of yet. It is in my
right ureter at the bladder and the ureter is blocked. He said
that I needed to do the surgery before that kidney shuts down and
die's. I don't know how much time I have before that happens.
When he gave me his choices after he was done talking and I told
him I wanted to think about what to do he said he already had me
on the docket to come in monday morning for the procedure. "
What kind of procedure? Find out first. If he's going to remove the
blockage and resect the "ureter", then that would buy you time to really
be able to "shop around". Without knowing exactly what they're going to
do, your answer should be "no".
It's your life man, not a doctor's. He certainly wouldn't allow someone
to operate on him without a full and complete disclosure.
My colon cancer blocked my colon, and it could have burst
"at any minute", they told me. They said I had absolutely no time to
"think about it". The operation had to be that night, within hours.
They had no operating room for me, and three days later they took me
to another hospital for surgery.
THREE DAYS LATER.
And that sir, was with a -total blockage-. Stage 3c/4 and very aggressive
cancer, with 7 out of 27 or so lymph nodes infected. 3-4 years at best....
I was in ICU for over three weeks, and recovery a week. It took
the surgical wound almost six months to heal. And then I was told
it was a lil' too later to expect much from chemo. 3-4 years at best....
That was over three years ago. No chemo, no rad (just Chinese herbs).
So dear Pat..... don't worry about a thing. Get yourself another, more
qualified opinion, and see what gives.
And, if for any reason standard western medicine fails you, don't even
think about quitting.... You still have other, very viable options awaiting you.
Relax, you've only just begun - the ride -does- get better!
You -will- be OK.
John0 -
oh, man!
Hi Pat,
Wow- I agree with the advice of others to seek out advice on the kidney cancer board and google as much as you can find on your situation. My brain is too tired and fuzzy to think of any sound advice at the moment, as it's late and I'm wiped out, but I am praying that answers and a good solution will come to you this weekend.
I'm praying right now for your wife to be able to deal with all this too.
I'm glad you sought out Dr. Cantrell, but I guess you've got to deal with the kidney situation first.
Take care and may God give you comfort and guidance-
Lisa0 -
Vanderbilt...other optionskapper48 said:Let me explain this a little
Let me explain this a little better. When my dr. called he told me that I need to make a choise fast. the cancer has not invaded my kidneys as of yet. It is in my right ureter at the bladder and the ureter is blocked. He said that I needed to do the surgery before that kidney shuts down and die's. I don't know how much time I have before that happens. When he gave me his choices after he was done talking and I told him I wanted to think about what to do he said he already had me on the docket to come in monday morning for the procedure. So I am thinking that he already made his choice of what he wants to do. I fell that I have wasted my time for the last 2 years with this hospital and all the Dr's that I have been dealing with. It just seems that I don't have choices even though they give them to me when it gets right down to it they have already decided what they want to do. When I ask them about doing different things they always tell me that thats all they can do. Just like the blood clot that is hanging on my port, they put me on blood thinners and told me there was nothing else they could do to remove it. I find that this day and age that there can't be any other things they can do. So I am walking around on egg shells worried that it might fall off and they tell me that if it does fall off it will more than likley kill me. No one at that hospital has given me any ideas of what else I can do. I really don't understand why this is happening to me This is one of the top hospital and cancer treatment centers in the country.(Barnes Jewish Hospital / Siteman Cancer Center) here in St louis I am so pissed right now about everything that is going on even when myself or Carrie ask questions we always walk out still not understanding what was said or what just happened. I was hopeing to see Dr Cantrell in Nashville next week but if my Kidneys are not working right he might not see me. I am thinking that I might go to Nashville anyway and find a new set of Dr's at Vanderbuilt, Maybe that is what I need to do. I am sorry that I am jumping all over the place trying to tell you all what is going on but I just can;t think straight right now. Carrie had to leave for awhile tonight because she was so upset, when she left she was crying and could'nt even talk to me. This whole thing I think is got her more upset than me. So now I am worried about her. There is so much more I could tell you all but as you can see I am not very good at typing.
Pat
Hello Pat. We live in Nashville and have been to Vanderbilt but currently see doctors at the Sarah Cannon Cancer Research Center - also known as Tennessee Oncology. Check both websites. They are very active in clinical trials. I also know a cancer research doctor in Missouri that is very good - Robert K Oldham. He has been a cancer research doctor for over 35 years or longer. Dr Oldham is now at Cape Girardeau Missouri Southeast Missouri Hospital. A great doctor, one of the best in the country especially in cancer research. Google his name and this hospital...he will be closer to you than Nashville. There is a great deal of information about him on the internet. My husband and I went to see Dr Cantrell last week. Still looking into his treatment. Everything about cancer is hard - decisions are hard and seem to get harder but all we can do is make the best decision possible. Tom is not doing well at this time. The clinical trial he started last week is not going well. Had to stop after the second dose of chemo due to what was suppose to be a rare side effect. Our Dr at TN Oncology is Dr Anthony Greco. Also one of the best research doctors - he worked with Dr Oldham when they were both at Vanderbilt. Dr Cantrell also told us this week when we visited him that we had one of the top, the best doctors in the country. That was good to hear coming from him. I wish I could offer you more. You will make the right decision. Take care of what will fix the kidney now...as you cannot take or start new treatment with a kidney not working and you don't want to have to have a kidney taken out or die. Will be happy to discuss any of this with you in a PM if you would like. Thinking about you and your wife....and Pat - it is okay for us to get away and cry as a caregiver...we just need to do that sometime. Mine is usually not in front of Tom - usually driving back and forth from work...but it helps to get the tears out. Take care - praying for you and your family today.0 -
Lots to considerkapper48 said:Let me explain this a little
Let me explain this a little better. When my dr. called he told me that I need to make a choise fast. the cancer has not invaded my kidneys as of yet. It is in my right ureter at the bladder and the ureter is blocked. He said that I needed to do the surgery before that kidney shuts down and die's. I don't know how much time I have before that happens. When he gave me his choices after he was done talking and I told him I wanted to think about what to do he said he already had me on the docket to come in monday morning for the procedure. So I am thinking that he already made his choice of what he wants to do. I fell that I have wasted my time for the last 2 years with this hospital and all the Dr's that I have been dealing with. It just seems that I don't have choices even though they give them to me when it gets right down to it they have already decided what they want to do. When I ask them about doing different things they always tell me that thats all they can do. Just like the blood clot that is hanging on my port, they put me on blood thinners and told me there was nothing else they could do to remove it. I find that this day and age that there can't be any other things they can do. So I am walking around on egg shells worried that it might fall off and they tell me that if it does fall off it will more than likley kill me. No one at that hospital has given me any ideas of what else I can do. I really don't understand why this is happening to me This is one of the top hospital and cancer treatment centers in the country.(Barnes Jewish Hospital / Siteman Cancer Center) here in St louis I am so pissed right now about everything that is going on even when myself or Carrie ask questions we always walk out still not understanding what was said or what just happened. I was hopeing to see Dr Cantrell in Nashville next week but if my Kidneys are not working right he might not see me. I am thinking that I might go to Nashville anyway and find a new set of Dr's at Vanderbuilt, Maybe that is what I need to do. I am sorry that I am jumping all over the place trying to tell you all what is going on but I just can;t think straight right now. Carrie had to leave for awhile tonight because she was so upset, when she left she was crying and could'nt even talk to me. This whole thing I think is got her more upset than me. So now I am worried about her. There is so much more I could tell you all but as you can see I am not very good at typing.
Pat
Pat, it seems to me that your doc does not consider you as part of your health care team if he is consistently giving you choices but then taking them out of your hands and proceeding as he deems right. No one can make the choices but you.
It seems that another opinion is in order. I know it may seem that there isn’t time based on what your doc has said. No one knows for sure just when anything will happen. The procedure the doc wants to do…did he say it would save the worst kidney? Did he say the blockage itself is cancer and could spread to the kidney?
No doubt about it, you have a lot on your plate right now and I can only imagine what all this is doing to you and your wife emotionally. There are no words which can take away the pain of bad news. Does your wife belong to a support group? Our loved ones need that as much as we do, because there they can express themselves as they don’t dare to us.
That said though, you must get down to ‘brass tacks’ as they say. Don’t give up just because the doc says no other options. This thing called cancer is a crap shoot for us all…always choices to make. We can’t second guess the choices made, only move forward from the place we are at the moment.
I guess if I was in your situation, I would want to know if the procedure on Monday is reversible if another solution can be found elsewhere. If so, it could buy you some time to find another medical team to work with. If the answer is no, then your choices go back to staying with current docs and doing what you can, or refusing the surgery and heat of the phone lines Monday looking for another health care team who sees you as a partner in the challenges you face.
No matter what you choose, know that here you will always have friends to lean on.
Prayers for you and your family for guidance during this most difficult time.
Marie0 -
Wow
You have a lot to consider for just a short amount of time that is going to given to you to decide. I agree with the others and get a second opinion. If your doctor makes all your decisions, then you aren't part of a team but a robot. Is this cancer from the colon cancer or another type of cancer? I do think you need to see another doctor though. Good luck.
Kim0 -
Pat....Annabelle41415 said:Wow
You have a lot to consider for just a short amount of time that is going to given to you to decide. I agree with the others and get a second opinion. If your doctor makes all your decisions, then you aren't part of a team but a robot. Is this cancer from the colon cancer or another type of cancer? I do think you need to see another doctor though. Good luck.
Kim
I have a co worker that just retired and he does dialysis at home for his kidneys. He has 5% usage in one and 20% in the other ..He is one a home dialysis every night for 10 hours while he sleeps. He is doing fine right now... The kidneys simply need to dispell what it filters. If it is blocked then I think that could be an option... Call Vandy and tell them your coming, tell them that its not for a second opinion, but that you want them to take care of this and be aggressive about it. Then do it...Tell them the situation and let them know who your Dr is and that you want them to call for all of your records. Tell your onc you need to be sure by getting a second opinion. He should be fine with that call...Love and Hope for you and Carrie.....
Pat and Carrie....You need badly to sit down and put the emotions aside long enough to get a game plan going...
Enjoy Sunday as a day of complete relaxation and make a short list of the things you need to do tomorrow, then take the rest of the day and do absolutely natta...........Buzz0 -
My brother
My brother has had kidney issues to deal with all his life. The ureter openings were too small, and the flaps on the ureters didn't close up right, and everything backed into his kidneys. No one realized why he was always so sick. Finally they discovered it and fixed him. He was still a kid, but they said he wouldn't have lived another year if they hadn't figured it out. Permanent damage was done to the kidneys already. Neither of his function at 100% - but he gets along fine. He does have to watch his diet to protect them.
If they can do something to protect the kidney, I think I'd tend to go for it. Since our kidneys and livers take a beating from all the other drugs they put us on, we need all the help we can get from them in de-toxing our bodies. #2 option you have sounds reasonable, tube in the ureter to open things up would be less invasive than #3, and should help you out.
I agree with the others here. Get a second opinion.0
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