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

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

AUS 800 for me? Please help me make up my mind.

I am a 20 year prostate cancer survivor. I am 85 years old. My Gleeson score is 7 (3+4). Over the years, I have undergone radical prostatectomy, radiation, and hormone therapy. Today my PSA is undetectable. I have experienced very little discomfort or pain because of the cancer. I am as physically and mentally fit as one could hope for at age 85. My wife of 62 years is loving and supportive. What’s my attitude toward having cancer? I don’t like it. Nevertheless, I’m coping with it and enjoying life.

That’s the good stuff.

I am jinxed with a significant problem. I wet my pants a lot–I mean oodles and oodles. It’s not painful. At times it is embarrassing. It is uncomfortable but not intolerably so. To sum it up, it doesn’t hurt, but it’s a dog-gone nuisance. I buy Guards and Depends at a big box store!

My urologist says she can fix it and would like to do so by installing an AUS 800. I am reluctant to take that step, primarily because of my age. As I understand it, here are some pros and cons.

First some pros:
1. I am told there is an 80 to 90 percent chance that the AUS 800 would keep my pants dry. Those are attractive odds.
2. At my age, the IRS life expectancy table gives odds of 50-50 that I will live seven more years.
3. My wife and daughters promise to support me in whatever choice I make.
4. Based on my health history and a recent physical examination, my internist says I am healthy enough to undergo major surgery.

Now some cons:
1. At my age, surgery will be a greater risk than it would for a younger person.
2. Because of the prostatectomy and/or radiation, I have scar tissue on my urethra where it attaches to the bladder. To accommodate the AUS 800, this must be fixed. I am scheduled to have this done November 21. My urologist says I will need to heal for six months or longer before the AUS can be installed.
3. I am living a relatively good life. Should I risk the possibility of fouling things up by undergoing what I consider to be elective surgery?

I have already obtained opinions from three doctors (two urologists and an internist). Now I would be grateful to hear from you.

Please help me decide. What do you think? Shall I do it? Or shall I not?

Jerry

tpelle
Posts: 156
Joined: Aug 2003

HelloOld-Timer (both of us), I'll be 80 years in December: Radical prostatectomy 9 years ago, no further treatment. PSA remains at <.01. Use average 2.5 Depends pads per day ever since. At annual meeting with urologist last week we discussed slings and AMS800 (which we do every year). He commented that slings for men are not all that dependable and have relatively short history. Second, AMS800 is gold standard, but it, too, sometimes doesn't help, sometimes malfunctions, one needs to be in a location where you can get to an emergency room fast (not hiking in the high Sierras) in case of malfunction, and, of course, one has to have the mental capacity and dexterity to manipulate the pump. Finally, he commented that some number of older men have the AMS800 turned off -- men who finally decide that leakage is less bothersome than manipulating the pump and worrying about the artificial sphincter performing.

I'm at the point you are -- should I leave well-enough alone. Urologist says there is nothing new ready for the market. Best hope is for new drug development. I used Imipramine (25 mg 3x/da) in my first nine months following surgery. It helped somewhat, but the dry mouth, jitters, insomnia and constipation were difficult. So after several starts and stops, I finally gave up on Imipramine. However, at this visit, we've decided to try Imipramine at the reduced level of 10mg 3x/day to see if it helps even a little without the more severe side-effects. I'm anxious to see if it helps.

I'll follow this thread and will be anxious, too, to hear the comments of others and of your decision. Good Luck. And, thanks for your post. tpelle

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

You offer many points worth considering -- a very thoughtful response. Let's watch this thread unravel together. Doesn't look like the topic is jazzy enough to get a lot of action. That's understandable. I continue to think about this matter, but I do not expect that I will pursue it beyond the thinking stage. Too much to lose and too little to gain. Oh well, we will see what happens!

I have an appointment with another urologist Friday, with one who is new in town. Just to talk. I don't expect to gain insights the other incontinent experts haven't offered. I'll let you know what she says.

Take care.

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Old Timer

Congratulations on your long-term survival. I don't know if you have tried using a condom catheter connected to a drainage bag that straps on your leg--if you want to discuss it, please send me a private message as I just stopped in to visit. I am an ovarian cancer survivor & a nurse.

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

I read a little about the condom catheter and would like to know more about it. I will ask my urology team for their thoughts about it and other options that do not involve surgery. I hold high regards for the skills of my doctors, but I often wonder if some urologists consider how much money various treatment choices provide as they recommend particular procedures. Oh well.

I would like to discuss condom cateters with you. I have not yet learned how to send private messages. Will try to find out.

Thank you for the uplifting message.

What a beautiful sunset on your logo!

mrspjd
Posts: 694
Joined: Apr 2010

Jerry,

Re CSN email activation, try this: Click on My CSN Space in the red box located at the top left of the page. Click on Edit, then Preferences, then scan down to Private Message Settings. Activate the features you wish by checking the box. Then, scan down and click Submit. Now, go back to the red box and click on CSN email. Follow the prompts for Write a New Message. Hope this helps.

Be well,

mrs pjd

P.S. Great pic of you in the garden. Nothing like home grown fresh sweet corn!

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

Thank you very much for sending these instructions.

Jerry

Trew
Posts: 892
Joined: Jan 2010

I had mine installed on August 5 and activiated on Sept 19. I haven't worn a pad since. My life is once again normal. for me the dripping was unbearable. I was willing to risk failure for the opportunity to be dry again.

I am still 62, but dripping would be terrible at any age. the surgery was not that unpleasant- and the not button down below seems natural to me now. I am absolutely delighted with my AMS 800.

Dr. Latini at U of MI did mine. She is a great doctor.

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

On this discussion board, I have read your story from its beginning two years ago to the present. It is remarkable and praiseworthy. I am proud of your accomplishment, which is especially important because of your young age. Gratefully, all of us who cope with pc experience various degrees of success. Overall, more good than bad has occurred to me during my 20-year journey with pc. In an earlier message to someone, I commented that "I am a happy camper."

I mentioned to you in a previous posting that I have a Michigan connection. I lived in Wyandotte for a short time when I was 17. That was long enough for me to become a life long Detroit Tiger fan. I also have a sister and other relatives in Michigan.

Incidentally, the doctor who will install my AUS 800 if I go that route is from Michigan. She studied at the U of Michigan and interned in the Detroit area. She's a good one; I have 100 percent confidence in her.

Thank you, Trew, for your informative and entertaining posts.

Jerry

Captain Bob
Posts: 2
Joined: Nov 2011

Hi Jerry,
I am a New Zealander who also has a home in Hawaii, and have recently ( in the last 2 months) had an AUS 800 installed by Dr. Tom Lue at UCSF in San Francisco.
I cannot believe how much better my life is. Though it is early in the piece, so far the results are spectacular, and absolutely wonderful.
I was so distressed by my previous condition, which was very similar to that which you describe, that I truly feared for my life. The stress was such that I was finding life very difficult. Friends of mine , who are medical professionals , agree that my condition was severely effecting my quality of life.
I am completely happy with the results I have had, and am happy to respond to any questions you have, if it is any help to you.
Kind regards,
Bob.

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

I appreciate you sharing your experience with the AUS 800. Most others who have posted their stories on the AUS 800 also have been pleased with the reults and recommend it to others. I am happy for what it has done for you and I wish you many years of success and satisfaction with it.

As for me, I am nearing a decision. I plan to make an announcement on this discussion board within a few days.

Smooth sailing.
Jerry

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

After careful study and consideration, I have decided that the AUS 800 would not be a good choice for me. I have mixed feelings about this because I am convinced that it is effective and works well for many prostate cancer survivors.

To sum up the reasons as I see them: (1) I am 85 years old. Even though I am in reasonably good health for an 85-year old, a variety of risks are greater than they are for younger men. In addition, because I have fewer years of life expectancy, the potential rewards are more limited (2) The American Cancer Society Web-page states that the AUS 880 is not a suitable option for older men and for those who have undergone radiation. Obviously, I am an older man and I did undergo radiation.

Where does this leave me? (1) The incontinence problem is not as horrible as I made it sound in my earlier posting. I was being poetic for emphasis. Incontinence does not impair the activities of an 85-year-old as much as it would a younger man. All in all considered, I am satisfied with things as they are. (2) Other options that can lower the impact of incontinence continue to be open for consideration. Some I am using, others I plan to look into.

Meanwhile, thank you for your postings. They helped me arrive at this decision. I am comfortable with it.

Jerry

PS. I wish to stress that I do not recommend this option to anybody else. If I was a younger man, I think I would go for it in a flash.

VascodaGama's picture
VascodaGama
Posts: 1617
Joined: Nov 2010

Jerry

Seniority values are important to me and I respect you and your decision, as my senior. Your “life” experiences and years in the “club” are important to the members of this forum and your comments will serve many guys confronted with the problem of incontinence.
I would appreciate if you describe your ways when dealing with the problem.

I am a fortunate survivor regarding continence even after two failed interventions (RP and RT). I have been dry since the day the catheter was taken out. Now under HT, I am experiencing frequency in urination at night (2/3 times). Nevertheless, continence is there for both, urine and stool.

Congratulations in the decision and continuing management of your case.

VGama

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

I am personally pleased to hear from you. I have read many of your entries; I am impressed with your knowledge and good judgement. Also, I want you to know every time I see your name tag I am reminded of the period of exploration during the 15th and 16th centuries.

In response to your question about how I deal with the incontinence, I offer the following comments. I have absolutely no leakage while lying/sleeping in bed (a real blessing), and little or none while sitting in chairs. While I am active (standing, walking, working), the leaking varies by time of day (approximately 25 percent during morning and early afternoon hours, about 50 percent in late afternoon, as much as 90 percent in early evening). I drink only one cup of coffee a day (morning) and no beer or other alcohol ever.
I use no pads or other protective measures at night; however, I manually squeeze my penis while walking from the bed to the bathroom. That works well. Typically, I go to the bathroom only once during the night. I use ultimate pads (Tina or Poise) almost exclusively at other times. Whenever I am involved in activities that will last three or four hours, I wear Depends underwear).

I live in a continuing care retirement home. Many of the activities in which I participate take place here. Most events last less than two hours. Coping with incontinence is not as difficult here as it would be if I was working eight hours.

I have tried ActiCuf squeezers. They work, but they are expensive and awkward to use. I hear that Cunnngham's product is better.

Thank you again for your input. Best of luck to you.

Jerry

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Jerry,

I hear what you'e saying but frankly, I'm not buying it. As you wrote quite elegantly, you're 85 and in reasonably good health. It seems to me what you are saying is that "it doesn't make any sense for me since so old and am probably not going to last that long anyway..."

I care for my 86 year old father-in-law who lives next door and he is in relatively poor health and I get the same kind of attitude from him as well..."nothing makes any difference, I'm not going to be here much longer anyway..." What is it with you guys?

In the opinion of a sassy, disrespectful 61-year old, I say GO FOR IT! The risks you allude to are minimal and you know it. The argument that diapers aren't that bad is crazy.

Of course any decision in this matter is yours alone and we will all wish you the best whichever way you go but I do hope you reconsider. Life is too short (even at 85) not to have the highest quality of life possible. Five years from now, you don't want to look back and think, "geez, maybe I should have had that done five years ago..."

Best,

K

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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's picture
Old-timer
Posts: 137
Joined: Apr 2011

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

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's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

tpelle
Posts: 156
Joined: Aug 2003

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

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

rch
Posts: 79
Joined: Nov 2011

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.

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

Captain Bob
Posts: 2
Joined: Nov 2011

Hi Jerry,
I respect and understand your decision. I am sure that you have thought this through well.
I, also, had radiation treatment after a radical prostatectomy, and the AUS 800 is working wonderfully for me, so that need not be an impediment.
What is really. Important is the way we all handle our situation mentally, and it sounds as though you have that well sorted out.
If this were not so, however, then it would be worth a go, as you are NOT and old man, Jerry.
All the best,
Bob.

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

Thank you all for your kind and thoughtful responses to my announcement of my decision concerning the AUS 800. As it seems appropriate, I will reply to each of you with additional thoughts/information. There is more to my story than I have told previously. I am willing to put more of it on record with the thought that it could be helpful to others now and on down the road.

I assure you that my decision is firm insofar as I know now, but it is not necessarily irrevocable. While I was growing up on a farm in Arkansas, many times my dad said, "Only fools amd mules never change their minds." Hopefully, I do not fit in either of those categories!

I'll get back to you soon, possibly after supper tonight.

Jerry

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

VascodaGama's picture
VascodaGama
Posts: 1617
Joined: Nov 2010

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

Old-timer's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

tdorman
Posts: 21
Joined: Jun 2010

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's picture
Old-timer
Posts: 137
Joined: Apr 2011

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

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