Is the AUS 800 for me? Please help me decide.

Kongo

Old-timer said:

Kongo, I Hear and Appreciate What You Are Saying
You always have good messages and express them well. Your response to me is a good example of that. You almost have me convinced that I should reconsider my decision. That is a possibility, but it doesn’t seem likely. Thank you for your encouraging message; I very much respect your judgement.

I wish to tell you more about where things stand with me.

Point # 1. Although I have coped with prostate cancer for 20 years and gone through three levels of treatment (RP, RT, and HT), the incontinence situation is relatively short lived. It came along gradually following the radiation sessions (in 2005). Thus it has not been around long enough to aggravate me to the point of frustration. I feel that I can handle it a while longer.

Point # 2. I understand what you say about old people complaining, "I won't be here much longer anyway." With a passion, I avoid saying that. Nevertheless, I know that the statement is true and take it into account as I make decisions about the future.

Point # 3. Because of the scar tissue on my urethra, It would be necessary to fix it and wait six months or longer for it to heal before getting the AUS 800 implanted. After another six week wait for activation, it would likely take a year or longer to complete the job. My quality of life would surely be lower during that year.

Point # 4. Because I am covered by Medicare and a good supplemental health care policy, the work would cost me little or nothing. Nevertheless considering the rapid rise in medical costs, I feel that it is ethically important to forego expensive treatment procedures if a less expensive but viable option is available. Not sure how this figures in here, but I think about it. If the cost is guaranteed to be high and the potential gain is likely to be low, should it make a difference in what we decide to do?

Thanks for telling me what you think and for listening to me.

Jerry

Points
Jerry,

All of your points are cogently expressed and I must say that your thoughts on Medicare and the cost of treatments in these days of skyrocketing health care costs are very well put. Back in 1995 I did a year fellowship on Capitol Hill working as a legislative assistant for a U.S. senator. Normally I worked defense issues but frequently I was on the hook to take calls from people worried about cuts to their Medicare or Social Security benefits. We referred to them as the "greedy geezers." You certainly don't fit into that category.

Certainly you have to weigh the risk versus reward aspects of this treatment option and the possibility that there might be an extended transition period that was uncomfortable and even that when it was all over you might be worse off than you are now.

I wouldn't even consider the medical cost issue and Medicare. You've paid your premiums and earned the benefits. While being altruistic is a great virtue, I would certainly not feel you were bankrupting the system to have an AUS implanted or to repair scar tissue on the urethra.

In my own decision process about which treatment options I considered, quality of life was the one factor that was the highest importance to me. It trumped everything else by a wide margin. I would rather have a shorter life than a longer one with poor quality. When I go, I want to slide sideways into the grave with all the credit cards maxed out, a cigar in one hand, a martini in the other singing, "Man, what a ride" or "I did it my way."

Of course, quality of life is perceived differently by everyone. For me it was not to be in diapers, to maintain a active and healthy sex life, and to avoid as many other potential side effects as possible. But I very much understand that what may be unacceptable for me is perfectly OK with someone else. I often read threads by men (or women) who say that although the sex is gone, they are still alive and isn't that great?. Huh? I just don't see it that way at all, particularly with prostate cancer where so many of the treatment options have similar outcomes and few of us are destined to die from this disease regardless of what treatment choice we make. I told my wife once (jokingly) that if I were ever in an accident and was in a coma that she should ask: "Doc, is he ever going to get laid again?" If the doc said no, her response was to be: "Pull the plug!" Don't get me wrong. I love life and want as much of it as possible. I just want it on my own terms and feel I have already had a rich and full time here and am not too worried about eking out every last minute. None of us are getting out of here alive anyway.

When I initially read your post my first thought was that you were using your mature years as a crutch for avoiding doing something that could significantly improve your quality of life. Too often we read threads in this forum of patients who are quietly accepting poor treatment from doctors because they aren't more aggressive in standing up for themselves and firing their doctor if that's necessary. As you have elaborated on your situation I do see your points more clearly. I might not make the same decision as you but I won't judge yours.

I do hope that you fully explore all the options and perhaps see a urologist that specializes in treatments that could improve your continence but at the end of the day, you're the one who has to live with it.

My very best to you and thanks for sharing openly on such a personal topic.

K

Old-timer

Kongo said:

Points
Jerry,

All of your points are cogently expressed and I must say that your thoughts on Medicare and the cost of treatments in these days of skyrocketing health care costs are very well put. Back in 1995 I did a year fellowship on Capitol Hill working as a legislative assistant for a U.S. senator. Normally I worked defense issues but frequently I was on the hook to take calls from people worried about cuts to their Medicare or Social Security benefits. We referred to them as the "greedy geezers." You certainly don't fit into that category.

Certainly you have to weigh the risk versus reward aspects of this treatment option and the possibility that there might be an extended transition period that was uncomfortable and even that when it was all over you might be worse off than you are now.

I wouldn't even consider the medical cost issue and Medicare. You've paid your premiums and earned the benefits. While being altruistic is a great virtue, I would certainly not feel you were bankrupting the system to have an AUS implanted or to repair scar tissue on the urethra.

In my own decision process about which treatment options I considered, quality of life was the one factor that was the highest importance to me. It trumped everything else by a wide margin. I would rather have a shorter life than a longer one with poor quality. When I go, I want to slide sideways into the grave with all the credit cards maxed out, a cigar in one hand, a martini in the other singing, "Man, what a ride" or "I did it my way."

Of course, quality of life is perceived differently by everyone. For me it was not to be in diapers, to maintain a active and healthy sex life, and to avoid as many other potential side effects as possible. But I very much understand that what may be unacceptable for me is perfectly OK with someone else. I often read threads by men (or women) who say that although the sex is gone, they are still alive and isn't that great?. Huh? I just don't see it that way at all, particularly with prostate cancer where so many of the treatment options have similar outcomes and few of us are destined to die from this disease regardless of what treatment choice we make. I told my wife once (jokingly) that if I were ever in an accident and was in a coma that she should ask: "Doc, is he ever going to get laid again?" If the doc said no, her response was to be: "Pull the plug!" Don't get me wrong. I love life and want as much of it as possible. I just want it on my own terms and feel I have already had a rich and full time here and am not too worried about eking out every last minute. None of us are getting out of here alive anyway.

When I initially read your post my first thought was that you were using your mature years as a crutch for avoiding doing something that could significantly improve your quality of life. Too often we read threads in this forum of patients who are quietly accepting poor treatment from doctors because they aren't more aggressive in standing up for themselves and firing their doctor if that's necessary. As you have elaborated on your situation I do see your points more clearly. I might not make the same decision as you but I won't judge yours.

I do hope that you fully explore all the options and perhaps see a urologist that specializes in treatments that could improve your continence but at the end of the day, you're the one who has to live with it.

My very best to you and thanks for sharing openly on such a personal topic.

K

Kongo, I Am Deeply Moved
Your profound and clearly stated analysis of my situation and decision is bringing second thoughts. Honestly, most of what you are saying is not totally new to me. I have gone through this thing forward and backwards, right side up, and bottom side down. My view of what’s correct has changed from time to time. Perhaps I should take another look.

I am considering putting several “documents” together and calling another family conference. As always, I know my wife and two daughters will proclaim their full support for what I decide. However, having them along gives me comfort and helps me clarify my thinking.

The documents I will put together include, but are not necessarily limited to, postings on this discussion board: mine, yours, and a few others that seem to be pertinent.

Depending on what comes out of that conference, I may make an appointment with one of my urologists to fix the scar tissue. That would be the next step, as you likely know.

Please don’t get your hopes up too high. This may be just a dream! I’ll keep you posted.

Take care.

Jerry

Kongo

Old-timer said:

Kongo, I Am Deeply Moved
Your profound and clearly stated analysis of my situation and decision is bringing second thoughts. Honestly, most of what you are saying is not totally new to me. I have gone through this thing forward and backwards, right side up, and bottom side down. My view of what’s correct has changed from time to time. Perhaps I should take another look.

I am considering putting several “documents” together and calling another family conference. As always, I know my wife and two daughters will proclaim their full support for what I decide. However, having them along gives me comfort and helps me clarify my thinking.

The documents I will put together include, but are not necessarily limited to, postings on this discussion board: mine, yours, and a few others that seem to be pertinent.

Depending on what comes out of that conference, I may make an appointment with one of my urologists to fix the scar tissue. That would be the next step, as you likely know.

Please don’t get your hopes up too high. This may be just a dream! I’ll keep you posted.

Take care.

Jerry

Hope
Jerry,

My only hope is that you live the highest quality of life possible, balanced of course with the whole risk/reward thing. It sounds like you have a wonderful doctor. Ask her what she would recommend to her father if he were experiencing the same symptoms.

Best,

K

Old-timer

Old-timer said:

Kongo, I Am Deeply Moved
Your profound and clearly stated analysis of my situation and decision is bringing second thoughts. Honestly, most of what you are saying is not totally new to me. I have gone through this thing forward and backwards, right side up, and bottom side down. My view of what’s correct has changed from time to time. Perhaps I should take another look.

I am considering putting several “documents” together and calling another family conference. As always, I know my wife and two daughters will proclaim their full support for what I decide. However, having them along gives me comfort and helps me clarify my thinking.

The documents I will put together include, but are not necessarily limited to, postings on this discussion board: mine, yours, and a few others that seem to be pertinent.

Depending on what comes out of that conference, I may make an appointment with one of my urologists to fix the scar tissue. That would be the next step, as you likely know.

Please don’t get your hopes up too high. This may be just a dream! I’ll keep you posted.

Take care.

Jerry

I met with my urologist today (the one who is a specialist in treating incontinence). She reluctantly accepted my decision to reject the AUS 800. She said she believes that I should not refuse the AUS because I am elderly (age 85). Nevertheless, she graciously agreed that it is my decision to make. We will move on from here.

As usual, my wife of 62 years attended the session with me. The three of us had an interesting discussion (with a few laughs) about my impaired manhood equipment and our good fortune in coping with it satisfactorily.

I will be trying two new twists as a result of today’s conference. Tomorrow I will begin using (trying out) the Cunningham Clamp. If any of you express an interest, I will post a report about how well it works for me after I have used it for awhile.

The second new twist is that I will take instruction lessons on Kegel exercises from a professional therapist. I am scheduled for four weekly sessions beginning in late January. Three months later, I will meet again with my urologist. I will also post a progress report on this program as it progresses.

I hope this information is interesting–maybe even useful–to somebody who reads messages on this discussion board.

Happy holidays to all of you.

Jerry

VascodaGama

Old-timer said:

Thank you again, Captian Bob
I appreciate your good thoughts and hopes. As you can see, I have posted more information to Kongo and VascodaGama. I guess you could say that I am still mulling it over. It is unlikely that I will change my decision, but if I do I will post it here for anybody who is interested to see.

Stay on course,

Jerry

Impaired manhood equipment
Jerry

Though I am continent, I join the crowd to say Thanks in advance for your reports on the Kegels and Cunningham Clamp (above). I hope it works well as you expect. AUS would be there anytime you decide to go on a “ride”.

I wonder what has been your “trick” with the “impaired manhood equipment” so that you’re “coping with it satisfactorily”?
Sorry for the intrusion question but this is a topic which goes almost in pair with incontinence which many survivors in our boat are trying to deal with. Your years of experience may help many here.

Wishing you and your family a wonderful holiday season.

VGama

tdorman

Jerry
I am 73 and had the AUS activated a couple weeks ago. Am completely dry, no pads. I had radiation in 2003 that created a lot of scar tissue and some damage to the urethra. The band could not be attached to the urethra normally due to the damage from radiation. The actual surgery took almost 4 hours because of the scar tissue. Dr Lockhart, USF Medical School in Tampa, used a special procedure developed by his friend at Duke some years ago. I undertand it is used often now with patients who have had radiation and damage to the urethra. I am told the AUS does not last as long in patients who have had radiation. If mine wears out I will have a new one installed at any age if I am healthy enough for the procedure.

I could not be more pleased with the outcome.

Best to you.

Ted

Old-timer

tpelle said:

Imipramine as an Option
Hello again Old Timer: In my earlier response to you (October 31) I indicated that last month my urologist suggested I try Imipramine again to reduce incontinence, not at the 25mg 3xda earlier dosage but at 10mg 3xda. When I did the higher dosage soon after RP nine years ago I encountered unacceptable side effects -- dry mouth, constipation, jitters and insomnia. I have now been on the 10mg 3xda dosage for three weeks and my pad usage has dropped from the 2.5 pads/da average to 1 pad per day. And, as important, there is no dry mouth, constipation, jitters or insomnia. At the end of each day now the Depends pad shows only minor saturation. So, at least for the moment, incontinence for me has improved significantly. I can go the entire day, even have a glass or two of wine occasionally with dinner, and change the pad only at bedtime.

Have you tried Imipramine? If not, it may be worth a try even though your PC treatment was different than my radical surgery.

A decision to go with the AMS800 was tempting for me also. Now that I am at 1 pad per day, I'm sure I will not give it further thought. Thanks for your post and all the response. tpelle

My doctor's response to Imipramine
When I asked my doctor if there might be a medication that could improve incontinence, she mentioned and then described imipramine. She was surprised that I had heard about it. I mentioned your experience with a lowered dosage. She had not heard of that possibility. The discussion then went on to other topics and did not come back to this. Actually, it driffed out of my mine. When you see a doctor, there seems to be such short time and so much territory to cover.

Jerry

Old-timer

tdorman said:

Jerry
I am 73 and had the AUS activated a couple weeks ago. Am completely dry, no pads. I had radiation in 2003 that created a lot of scar tissue and some damage to the urethra. The band could not be attached to the urethra normally due to the damage from radiation. The actual surgery took almost 4 hours because of the scar tissue. Dr Lockhart, USF Medical School in Tampa, used a special procedure developed by his friend at Duke some years ago. I undertand it is used often now with patients who have had radiation and damage to the urethra. I am told the AUS does not last as long in patients who have had radiation. If mine wears out I will have a new one installed at any age if I am healthy enough for the procedure.

I could not be more pleased with the outcome.

Best to you.

Ted

Thank you tdoman
I appreciate your interest and positive comment about the AUS 800. I believe that it is a good tool and wish that I could feel that I was a viable candidate for it. I congratulate you and others who benefit from it.

Best of luck to you also.

Jerry

Old-timer

VascodaGama said:

Impaired manhood equipment
Jerry

Though I am continent, I join the crowd to say Thanks in advance for your reports on the Kegels and Cunningham Clamp (above). I hope it works well as you expect. AUS would be there anytime you decide to go on a “ride”.

I wonder what has been your “trick” with the “impaired manhood equipment” so that you’re “coping with it satisfactorily”?
Sorry for the intrusion question but this is a topic which goes almost in pair with incontinence which many survivors in our boat are trying to deal with. Your years of experience may help many here.

Wishing you and your family a wonderful holiday season.

VGama

"Impaired manhood equipment" follow-up to VascodaGama
Interesting that you picked up on my reference to my "impaired manhood equipment." I was expecting and hoping that someone would. Not intending to brag, but yes, I have learned a few tricks during my 20-year journey living with prostate cancer. Some other men, and perhaps women, might be interested, and maybe even helped by reading about my experiences.

Some of it is too personal to describe in detail on the discussion board, but there is much that I can tell. I need several days to recall events and how I felt about them, organize the material, and write it up. A few days after the holiday season, I will post my story on this discussion board.

By the way, incontinence is not my total story. I will also tell you about some aspects of the ED side effects and how I have coped with that. Don't get your expectations too high, but I think people will find it interesting.

Happy Holidays

Jerry

rch

Old-timer said:

I will look into Imipramine
Thank you for your response. I googled Imipramine. I don't need it for depression but if it works for incontinence, I may try it. I will talk with my doctors.

Thank you for your interest and good wishes.

Jerry

Imipramine
Imipramine might work for you, but I advise you start out with a very small dose of 10 mg at night first and slowly titrate up to 10 mg 3 times a day. One of the major untoward side effects of Imipramine in the Elderly is 'orthostatic hypotension', ie- blood pressure fall when you suddenly stand up or stretch. That is why you start out with a small dose at night first. It is also sedating for most people at least initially.Most Urologists won't explain these things to you ; so I suggest you get a consult from the Pharmacist and discuss the side effects and drug interactions when you pick up the medication.