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Posted 8/25/2007 3:10 AM (GMT 0)
UncleDan, you are making GREAT progress. Wow, only 10 days post surgery and dry already. Outstanding! Don't be discouraged if you have a leak or two once in a while. I found that too much activity/exercise and perhaps a glass too many of wine (me? never!) would result in a loss of some control. I'd restart the kegels and things would dry out quickly. What a great service to others to start a PCa support group, especially those that continue to have problems. It's so easy to feel like you're alone. Hope we continue to hear from you as this project develops.
Posted 8/25/2007 3:50 PM (GMT 0)

Hi uncledan,

I would just echo what puget said on your progress.  That’s really terrific! I’m really glad you are starting a support group.  There is a support group starting up in my area by the UsToo organization in September.  So, I’m really looking forward to contributing.  Anything we can do to be a friend to others is, in my opinion, the best thing we can do on this planet.

Hang in there with us so we can see your progress all along. Thanks for providing us with inspiration.

Best regards,

Idaho

Posted 8/26/2007 8:01 PM (GMT 0)
Well I had an opportunity to put Puget's advise ( about not being discouraged ) to work today. For insurance I wore a depend to church. Good idea even if it was mine. It wasn't a dam breaking, but it would have been embarrassing if the small spot came through to my slacks. Better to be safe than explaining. In less than 3 months of learning of my cancer I have talked to several men who are going to be tested. One is going to have biopsies even though his PSA is less than 1. He was exposed to Agent Orange in Nam. My posts are quite long, however it is in the interest of getting the most info out to those who are like I was 3 to 4 months ago. I believe that getting the biopsy was the best thing I did. I have heard several say that it was uncomfortable and I will agree it is, but mine was not that unbearable and I did not have any anesthetic. It only took about 30 minutes from start to finish. As stated before I only live about 2 blocks from the lab and I walked over and back. I had the biopsy at 10AM and by 2 or 3 that afternoon I was unaware that it had taken place. In fact the ultrasound devise was more uncomfortable than the actual biopsies. Uncle Dan
Posted 8/29/2007 2:14 AM (GMT 0)
Tuesday evening, Started a day with a pad, had a little leakage, maybe I'm relying on the pad too much. At 10AM I removed the pad and went the rest of the day trying to remember not to make any sudden moves or make the mistake of flexing the wrong muscle. Good results. Now 9PM and I'm dry. I need to be sure to keep this perspective as we are off to Cape Cod in September for 10 days on a coach tour. Thankfully me wife is the leader of this tour so she can stop the coach as necessary to make sure I get plenty of upright standing and walking. I sure don't want to get DVT on this trip. I will be able to walk front to back on the coach every so often, but that's not like getting out on the ground and walking. Any suggestion to help with this problem will be appreciated as it will only be 32 days since surgery when we leave. Thanks, Uncle Dan
Posted 8/29/2007 2:33 AM (GMT 0)
tongue  Hey ~ Uncle Dan,
Thanks for the updates.... they really are important to all of us and especially Newbies and Lurkers.. Kegels, walk, stairs.... really important.  Continue moving forward and we are right there with you.  Would like to be with you on your Cape Cod trip too!!! 
Keeping you close in thoughts and prayers.

In Friendship ~ Lee & Buddy

Posted 8/29/2007 10:29 AM (GMT 0)
Uncle Dan,

As I got close to leaving the pads behind, I would take scissors and cut a liner into thirds and use the adhesive left to hold the smaller pads in position.

I am of the mind that doing things (Not heavy lifting!) challenges your new coordination of control in the best way - and speeds ultimately leaving the pads behind.

However, perhaps while on the bus, use an entire liner to give you a little more time between any need for change that might occur!

Enjoy your trip!

CCedar
ICTHUS!

Posted 8/29/2007 2:09 PM (GMT 0)
Uncle Dan said: I sure don't want to get DVT on this trip. I will be able to walk front to back on the coach every so often, but that's not like getting out on the ground and walking. Any suggestion to help with this problem will be appreciated as it will only be 32 days since surgery when we leave. Thanks, Uncle Dan

From my experience, using TED hose and some seated exercises while travelling will do wonders for you. One exercise is particular does me good: While sitting, slide your feet back under your seat/chair. It may take something under them to raise them to the proper height, but you want the top of the back of your calf muscle to touch the under seat edge. In this position, do toe stands- lifting your feet up, until only the toes are still on the floor. At the same time, clinch your thigh muscles in sets of 10 or so. This creates resistance, and promotes blood flow out of the legs. It takes a little practice to get the hang of it, and you may have to carry some type of lightweight block, depending on your leg length relative to the seat height. This exercise really moves the blood out of my legs. Hope it will help for you.

James C.
Posted 8/29/2007 8:01 PM (GMT 0)
Thanks for the info on exercises, I will try to get proficient with them before I leave. I know how it is to be waiting, however it is best to allow the swelling to reside that is caused by the biopsies. Basically you are only talking about 9 weeks and most surgeons want at least 8 weeks between biopsies and surgery. So I think you are right in line and on schdule. Good luck and great Doctors make everything easier. I am still having a little leakage every once in awhile when I don't heed the warning. It's my own fault. Most of the time I get throuh at least 6 or 7 hours without a problem. I can tell it is getting better every day. Thanks for the encouragement. Uncle Dan
Posted 9/6/2007 3:48 AM (GMT 0)
Wednesday, 22 days since surgery, I have a question. I am not being smart or tricky, but I have a feeling ever once in a while that I am leaking, however when I go to the bathroom there are no signs of leakage. I admit it doesn't feel like I have poured out a bucket full, but it does feel like enough has come through the pipe to wet the pad. It doesn't though, so I guess I am remaining dry even though I feel like I'm not. Did anyone else experience this? Thanks, Uncle Dan
Posted 9/6/2007 3:57 AM (GMT 0)
Yes, I know exactly what you're describing. I'm 3 months post-surgery and essentially dry all day. Every once in a while, though, I get the same feeling-- feels like urine is actually moving down the urethra. Sometimes, I actually do leak a very small amount, but most often there's nothing. Maybe it's pressure on the sphincter, which closes up to prevent the leak. Whatever the mechanics of it, I'm glad it's a usually a phantom leak, at least so far.
Posted 9/12/2007 4:36 AM (GMT 0)
It has been amonth since surgery and I would like to mow lawns tomorrow since we leave Friday for a ten day trip. My mower is not all that comfortable and the yards are not exactly flat so I am a little concerned. I have been driving and riding in pick up trucks off and on for about two weeks. Any comments from those who may have been through this when the grass grows? Thanks, Uncle Dan
Posted 9/12/2007 10:49 PM (GMT 0)
Well I mowed lawns today, about two acres. I took it slow and tried to go easy over the known rough spots. I feel good and beleive it went well. The best news was I didn't use a pad all day. This can be deceiving sometimes though as it has a tendency to creep up on you when you least expect it. I am scheduled for a PSA test in 13 days and a visit to the surgeon in 15. They won't give me the results at the lab , they fax them to my surgeon. I hope he has good news. Uncle Dan
Posted 9/17/2007 1:22 AM (GMT 0)
Hi, I 've got a concern. I have been reading a lot of posts on this site and it appears that several have been diagnosed as encapsulated but later have problems with raising PSA readings, resulting in having to take chemo or radiation. Am I reading this right? My concern is that I had negative margins and negative lymph nodes, etc., but I might be a candidate for further treatment. I will be going back to my surgeon on September 26th. Any comments? Thanks, Uncle Dan
Posted 9/17/2007 10:38 AM (GMT 0)
Uncle Dan,

(I have 18 or so nieces & nephews myself....)
Your "high 7" is the only alarm for more concern than others with a post-surgery pathology that indicated encapsulation.
My understanding is that with the "high 7," you will get PSA's more often than others with a "6" for some time.
Keep in mind that the first - so soon after a prostatectomy - PSA might have some residual PSA readings - and that influence -if found- will go down.

At this point,  given your fairly rapid recovery from incontinence and noe indication of capsular penetration: 
cool    "You gotta, accentuate the positive and eliminate the negative and latch on to the affirmative and don't mess with mr. in-between...." cool

That is to say, until you find that your physician tells you that you need HT &/or radiation (My understanding is that chemo will not be an option.),
Keep your 10 and 20 year plans up-to-date!

Your Friend,

CCedar
ICTHUS!

Posted 9/17/2007 5:24 PM (GMT 0)
nono  UnClean

Your reports have been GREAT so far, so  the percentages are in your favor.  With all the NEGATIVE path reports, you should get a good PSA reading.  We all hope & pray that will be the outcome. 

During my journey I met a PC Survivor who had surgery 11 years ago, two years later his PSA started to rise.  He had 7 weeks of radiation, and has been fine ever since. The wondering of the mind is our worst enemy.

KEEP UP THE GOOD THOUGHT, YOU WILL BE FINE!!!!!

Posted 9/17/2007 6:01 PM (GMT 0)
Hey Uncledan,

Yeah, we all have different experiences with this disease and its treatment. We make our choice of treatment to the best of our ability considering our history, biopsy results and advice from our doctor. Then we hope for the best. No body knows everything about Prostate Cancer and sometimes it surprises us - sometimes good and sometimes bad. Thats why we all sweat out the PSA numbers so much. But the up side is that we get to celebrate when we get zeros....

Jim
Posted 9/18/2007 1:21 AM (GMT 0)
I want to thank Cedar Chopper, Broker59 and Biker90 for the words of encouragement. I know you are right about the positive thinking, but all you men know how hard it is to keep the negative thought from creeping in. I agree that PC is never the same for many different people. I am on vacation ( Cape Cod ) until Sunday and then have my PSA lab test Monday and see my surgeon Wednesday. I will hope for 00000's.
QUESTION???. When I have to get up from a chair is it a good idea to hold a Kegal during this action?
Thanks, God Bless you all, Uncle Dan
Posted 10/26/2007 4:48 AM (GMT 0)
Met with salesman yesterday. I am now waiting on FEDEX to deliver. A new ball game for me starts soon. Having all of one nerve and part of the other removed doesn't leave much to work with. Time will tell. I go back to the surgeon on November 28th. Everything is going as can be expected I suppose. Will be getting that second PSA report in about a month. 000s last time, hoping for more of the same. Late and tomorrow is a work day even when you are retired things still have to be done. Uncle Dan
Posted 11/8/2007 12:05 AM (GMT 0)
I have been trying Viagra and Lavitra sparingly. Neither has been successful at this time, however I started using the pump about 10 days ago. I am using it to pull the blood into the penis. I am not trying to keep it in there with a ring yet. I also have not taken either of the meds before using the pump. As far as using the pump or taking meds everything I've read says neither works unless you are sexually excited. I intend to continue using the pump and after my next Dr. visit 11-28 I want to start using the pump with the meds and see if this will give me the results we are all looking for. One thing more, I am not going to go the injection route as long as I can see some results no matter how slow it happens. I am leery of Peyronies, scar tissue, or both. Of course everyone has their own decision to make. Good luck to all on the forum and God Bless too, Uncle Dan
Posted 11/27/2007 2:33 AM (GMT 0)
I went to the lab today and had blood drawn for a PSA test. The results will be faxed to my Dr. tomorrow and I will meet with him Wednesday. I am finding I am more apprehensive about the PSA teat results than I was about the surgery. Has any one else been effected like this? I was finally able to use the pump and thought I would be able to preform, but alas it lost its stiffness before entry. Guess I will use a smaller ring next time. At least I have something to talk to the surgeon about. Thanks for all the support on this site. Uncle Dan
Posted 11/27/2007 11:22 AM (GMT 0)
Uncle Dan,

Waiting for these micro PSA results is a lot more than annoying!
Our prayer group here will be holding you close.


Those using the pump here on this forum don't like it for intercourse much.
It is so much work and likely frustrating for the spouse.
Still, it is necessary for keeping your tissues viable while you heal.
You will likely get normal/usable erections sometime in the next two years with just Viagra or Cialis or such (see alldaychemist dot com for low cost seldinafil citrate aka viagra).  Sooner than later if you use the pump and "most sooner" if you use injections.

If you and your spouse want to try reliable intercourse sooner, I would suggest looking into injections.  (See Tamu's thread)

Some don't want to deal with injections and just rely on "fooling around" with the pump and perhaps some toy/massage for the spouse to have fun while recuperating.
Be there for one another!

Wishing you perfect health.

CCedar
ICTHUS!

Posted 12/5/2007 4:38 AM (GMT 0)
Appreciate the info, but spouse was upbeat about the try for intercourse even with out success. Her attitude was at least we know it takes work and I had some info to discuss with my surgeon. I am not in any hurry about the injections as I am not one to look for a quick fix, with Peyronies around the corner. I am not afraid of the needle, but I'm not in any hurry to inject myself either.
I am a little leery about scar tissue. It may not be a problem, but I'll wait. Uncle Dan
Posted 12/7/2007 7:17 PM (GMT 0)
The electric pump is so sarey sounding. I know it's very safe but the mind plays tricks on blondes...I picture the thing suching an in-law up from the deep south or something :>)

Swim
Posted 12/11/2007 5:38 AM (GMT 0)
I didn't opt for the electric model. I am able to work the mechanism with no problems. It's the final result that I need to work out and have better success with. Uncle Dan
Posted 2/26/2008 2:00 AM (GMT 0)
6 month PSA 0.04 I guess this is undetectable? Uncle Dan
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