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Questions on Grandfather

12 years 9 months ago #5512 by harleygirl
Shaggy, my heart goes out to you. My Dad is 80-years-young and has just gone through a 7.5 hour bladder and prostate removal due to cancer on April 11. He, too, had an agressive kind of cancer and the urologist (who was also the surgeon) was reluctant to do the operation due to Dad's age, but felt it was his only chance of beating the disease. Dad saw an oncologist who didn't think radiation was the way to go as it, too, could have lots of potential complications down the line.

My dad is a tough man and in relatively good health otherwise and made it through the surgery fine with an 11-day stay in the hospital (or at least we thought he was fine). The doctor said no lymph nodes were involved and that the cancer had not yet reached the muscle wall of the bladder. However, there were complications which put him back into the hospital one day after he got out and those complications kept him there for 18 more days! He was finally dismissed last week and is still fighting the battle to recover. I'm still not sure that they remedied all the things that caused him to have to go back into the hospital. Guess time will tell.

A few months before surgery, he had two TURB procedures to scrape the tumor from his bladder and during one of these procedures, the urologist removed some tumor from his prostate that was pressing on his ureters making urination difficult or even impossible. He felt so good after he recovered from this procedure that he had second thoughts about having the surgery, but decided to go through with it anyway. Today he is questioning if he made the right decision to have the operation since so many things have gone wrong as a result of having it and he feels much worse now than before. Dad says when they fix one thing, they break two other things making yet another procedure necessary.

If your grandfather decides to try to find someone who will do the surgery, I can't stress enough how important it is to find a doctor who does radical cystectomies on a regular basis and a hospital where these procedures are done all the time. My Dad didn't have these things and I truly believe that if he did have, the outcome most likely would have been different as far as the complications are concerned.

Everyone who responded to all my posts on this forum have stressed how difficult an operation a radical cystectomy is to recover from. Based on what I've seen with my Dad, I can only strongly agree. One thing I had a problem with was letting my Dad make his own decision about treatment. I didn't agree with what he wanted to do, but he is of sound mind and capable of making his own decisions. Sometimes we have to stand back and give them the respect they so richly deserve.

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12 years 9 months ago #5481 by Shaggy
Thanks F&F - I definitely feel that a 2nd opinion is needed. Since they have already begun the radiation I am waiting until next week to see what the Radiologist says about the size of the tumor and if the rad has helped or not. Then I hope to hear what the cancer specialist has to say about the next options. From there I feel is where the 2nd opinion will become invaluable to us.

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12 years 9 months ago #5466 by Mike
Shaggy all this seems to depend on your Grandpas health meaning his strength for the chemo and surgery. The only way to treat an invassive tumor in the bladder is chemo and then surgery to have the bladder removed. Radiation can work to shrink the tumor and in some cases even get rid of the tumor but those percentages are low and you mentioned it has spread to the lymph nodes and lungs possibly. Radiation alone here will not work. If your Grandpa is up to it get a second opinion here cause they are treating him only with radiation because of his age you are right in as far as some Dr's thinking he has led a fairly long life which he has. I have invassive bladder cancer and I am only 52, and got a second opinion and I am set up at a great hospital for my treatment. Sounds to me you want the best for your Grandpa so get that 2nd opinion there are Dr's out there that don't just look at age and their percentage rate for surgery. Best Wishes, Joe

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12 years 9 months ago #5465 by Shaggy
Thanks for the support.  

Grandpa started radiation Monday, and is slated to go for 3 weeks.  Now my concern is that the Drs. haven't really even talked about a plan for after the radiation.  It seems to me that if the radiation works, and it destroys the tumor, thus relieving the backup on the Kidneys, and the Creatin levels drop, then perhaps a low dose chemo might be an option.   Wouldn't you want to have a plan in place in the event that it does work out as we wish??

I'm also curious about something.  I have seen Dr. Lamm's name here, and it seems that I had heard it somewhere before as well.  I'd like to get my grandfather a 2nd opinion, and I see that there is a way that Dr. Lamm does that.  Is this a sound practice, or would we better to find someone that can actually talk to him?  It sounds as if he would be knowledgable enough, but it still leaves me wondering.

One more question for you out there - Has anyone heard of a newer pill (been out about a year) that is basically for the lymph nodes and begins with an "S"?  It was mentioned to me that it apparently doesn't get rid of it in the lymph system, but it is very successful in stopping the spread any further.  Might be another option for us.

Thanks for any advice
Chris

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12 years 9 months ago #5436 by wendy
Hi,

Maybe your grandfather has a point about surgery at his age as there are studies coming back saying that there is a high mortality rate for those over age 80 who have bladder removal surgery. But in case of lymph node and lung metastases even younger people get passed over for surgery sometimes, because it won't be curative at this point. Chemo is the usual course of treatment for bladder cancer that has spread. There is an active chemo that is not as toxic as most, and might be of help, Gemzar. Usually combined with cisplatin or another platinum drug but these are very toxic.

Radiation could help control symptoms, you want to avoid blockage that would cause pain and possibly sepsis. I would hope that they remove whatever tumor they can by transurethral resection. That's not the same as bladder removal, and he should be able to get through that fine.

If the doctor is dragging his feet like this maybe your family needs a doctor who won't automatically write somebody off because they are elderly. It should be left up to your grandfather, and he should be given some choices. The suggestion made here are just my thoughts, I"m not a doctor, but I do feel we deserve to be given some options no matter how old or how far the cancer has spread.

I wish you and your family well,
Wendy

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12 years 9 months ago #5435 by Shaggy
Hi everyone.  We found out recently that my grandfather has been diagnosed with bladder cancer.  Not living near him, I am getting all of the info 2nd hand, but I am not real sure that my aunt is getting very much even 1st hand from the Drs.  Perhaps she will get on here and help fill in the blanks for me as the info comes along.

A quick run down on him, and then a few questions if you don't mind.  Grandpa is 85 yrs old (86 in Sept), and has highly invasive bladder cancer (haven't been told a "Stage" or anything like that).  It is a 2" tumor that is in the bladder muscle, and apparently has spread to the lymph nodes, and they see a spot in the lungs, but aren't postitive of the cancer spreading there, although it makes sense.  He doesn't feel that he can survive a major surgery for the removal of everything.  He is in the same boat with Chemo treatments.  Right now the only option that he has been given is to have radiation on the bladder to try to destroy the tumor and relieve the pressure on the kidney and hopefully lower the Cretin levels. I can understand the rationale behind the bladder radiation, but there is no talk about any treatment of the lymph nodes. Is this even possible without chemo? Are there any ways of keeping the LN in check (guess along the lines of if we can't destroy it, is there anyway to keep it at bay while continuing on and surviving).

It has taken a long time (at least in my way of thinking) to have anything done.  They (Drs.) first  realized something was wrong back on March 26.  This man hasn't even started any type of treatment yet!  He hasn't had any 2nd opinions as of yet as we were just told the final info Thursday night.  Does treatment tend to lack behind with a person of this age, with many feeling that he is older and lived a full life anyway?  To my knowledge these Drs. haven't even mentioned what else they can do to continue and/or improve his chances of survival, let alone doing what they can for a long and better quality of life.  Right now this man is in pretty good shape, and he can get around fairly decent.  I could only hope to be this good if I reach his age.

I'm sorry to ramble.  As many of you, I'm just looking for answers, and hopefully someone has some words of wisdom that can get us on the right path.  Any treatments, ideas, or anything will be very much appreciated.

Thank you,
Chris

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