biochemical recurrence

So the biochemical recurrence has me worried. I'm 14 years since my initial radical prostatectomy. PSA levels have been rising for 3 years. My question is at what point should my Urologist suggest for me to see oncologist? I'm not putting numbers, I've read so many conflicting suggestions online. I will say my initial diagnosis was made at age 53 ( now 67, going to be 68 next month) Gleason score of 7, and PSA 5.2, and Cancer stage T2c. So being curious as I am would like some input on this.

Also I've had leakage since after surgery. Started with one pad, sometimes two a day. I could live with that. Started leaking more 2 to 3 pads a day everyday. Had cysto on 4/7/15 and found scar tissue, had surgery to remove on 4/22/15. wore catheter for 2 weeks and leakage was worse, 6 to 7 pads a day. another cysto on 11/10/15 reviled more scar tissue. Back to surgery on 11/17/15, which they found a staple left from initial surgery, it was removed. I'm using 3 to 4 pads a day fully soaked, sometimes leaks through and I have wet jeans. I've learned years ago that if I wear really tight undies putting the extra pressure it lessons the leaking. I walk a lot and watch what I drink and still it leaks. I went to a festival yesterday (live in Louisiana and we have festivals all the time) and have to bring a back pack with extra pads. My Uro wants to implant the AMS 800 Urinary Control System. My worries are that I'll still have to wear pads and have this foreign object implanted and still have recurrent urine leakage. Anyone had this done? and how did it work for you?

And don't even get me started on my sexual problems!

Any advice would be appreciated!

15 Replies

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  • I am sorry you are having so many problems. Have you done any Kegel exercises? They help with incontinence. They take time and practice.

    I don't know anything about the Urinary Control System.

  • I've been doing the Kegel's for years, no help at all. 

  • I am sorry. I hope you can find some help.

  • After reading your post, your problems sound a lot like mine.  I am a facilitator for our local PC Support group.  Here's what I did. Perhaps it can start a conversation with your Doc.  Like you, I was diagnosed early (age 52, 75 now) had RP surgery.  PSA began to rise a year later.  Had 36 treatments of external radiation. PSA went down. A year later PSA again rose.  Dr. wanted to start Hormone treatment to eliminate testosterone. Insurance would not cover it so I opted for having my testicles removed. (orchiectomy) to stop the production of testosterone which is thought to fix prostate cancer. 

    PSA stabilized at 0.02, no sign of cancer.  My incontinence was minor for about 20 years until I suffered 2 heart attacks a year apart.  Since then I have basically lost all control of holding my urine.  My urologist suggested I have an Artificial Urinary Sphincter (AUS) installed which is what your Doc suggested.  It WAS and IS the answer to my incontinence issue.  Unfortunately not many men are willing to have this procedure done (I guess it's some kind of macho thing) but there certainly isn't anything macho about going around peeing your pants for the rest of your life. It is a simple procedure requiring only an over night stay (in my case) and I have heard some Docs do it as an office procedure.  The device is not activated until everything heals (2-3 weeks) Then it is turned by a button and no more pads.   

    In simple terms, it works like a hose clamp on your urethra with an "on" button inserted in your scrotum. To use, all you do is squeeze the "on" button and your bladder empties and after 60-90 seconds it shuts itself off.  Job done. No more pads, no more wet pants, no more looking for the nearest bathroom.  

    As far as having another object implanted..., my Doc said "if, and it's a big if, anything goes wrong with device,  it can easily be repaired.  Hell, some of the natural parts of my body have quit working, so if there is something artificial that can fix my problem, why not go for it?  The longer you wait, the less opportunity you will have to fix your issue.  A friend of mine had the same problem and he waited and waited, and finally decided to have it done only to have the Doc tell him he waited TOO LONG. His urethra (pee hose) was too damaged and fill of scars.   Now he has to cath himself everyday.  No thanks.  Good luck.   

  • Thanks so much ng for your response. My next appointment is in May the week of my birthday. We have discussed this and he gave me a DVD to watch. Your device, is it the AMS 800?

  • Cajun 1949, I looked for my papers concerning the AUS I had installed. Couldn't find them but after researching the AMS 800 on the internet, it looks to be the one I had installed.  If you go on the internet and type in "types of artificial urinary sphincters" a bunch of stuff will come up with detailed info about their reliability, etc.  Something else to think about..., another Urologist that I had for a while and liked, only does the "urinary sling" which is also an option but not as effective as it basically only gives support to the bladder and really doesn't prevent leakage as well.  He recommended I change Docs to have the AUS put in.   The sling, according to my current urologist who did my AUS said they are used more for women and he didn't recommend I get that.  I do not personally know anyone else who has the AUS, but 2 of the nurses in the OR both told me that their dads had them installed and were very satisfied with them.  As I said, a number of men who are moderately incontinent just have not reached the point where they are ready.  I guess the idea of having to cut into the "ball sack" is too much to bear. But as a rule incontinence ONLY gets worse with age. 

     2 very small incisions. One about an inch long just above the penis to install the hose clamp and tiny liquid reservoir and 1 smaller one to install the activation button.  Some bruising and discoloration will occur, but very little real discomfort. Once the device is activated, NO MORE WORRYING ABOUT ACCIDENTS.   

    Much better than pads and wet pants.  Good Luck and keep in touch.           

  • thanks for taking the time to answer me. you were very helpful

    Jim

  • Jim (Cajun 1949)  Glad I could help.  I wish I would have had someone to talk to or have a website like this way back in 1992 when I was diagnosed.  My original Urologist, although very good was from the old school and really didn't feel the need to go into detail as to what was ahead and I didn't know a single guy who had ever had PC.  I thought my funeral was right around the corner.  We PC survivors need to tell every man we know that PC can be cured IF dealt with early.  Let me know what you decide and again, good luck. 

    Ron (ng27868168) 

  • I will leave the incontinence issue to the others.  As far as next step for PCA, the only conclusive thing that will show evidence of further metastasis is a Bone Scan and a CT scan.  But these will only show tumors that have reached the size of approx. 1 cm.  if there is nor evidence of metastasis, then the current Oncology guidelines is not to do anything.  You can always ask your Urologist to refer you to a Medical Oncologist for testing and 2nd opinions.  Best of Luck

  • Thanks bb

  • I see something here that all surgeons should pay attention to. After my radical via the da Vinci it took a while longer than usual before the surgeon could remove the catheter. And with a couple of months doing Keegles, I was totally continent !!!!  But, damnit, I passed a kidney stone. OK , but my urologist wanted to scan to see if there were more stones on there. There were 4 more. We decided to wait and watch. Nothing happened for a year. But it was like wearing an ankle bracelet. I was afraid to to go on a cruise. What would happen if a stone should decide to drop while in the middle of the ocean. So we decided to go up there and get them out. BIG MISTAKE !!!!!!! When my urologist went up there to get the stones,  he damaged the scar tissue. Incontinence started. Not as bad as when the surgeon went up there and removed the remaining scar tissue prior to the installation of a failed mesh sling. 

    Perhaps urology surgeons should create scar tissue on purpose when they connect the urethra to the bladder, after removing the prostate. Just saying.  Would love to hear what a surgeon has to say. 

  • Hi, I am 47 years old and was diagnosed with prostate cancer at the age of 42. I have extetnal radiation and brachytheraphy done. Had problems urinating after brachy. Could not urinate and when I did manage ti urinate, I would urinate clots of blood. One Saturday I was rushed to the emergency rooms as I had a total blockage.The nurse and doctor on duty all tried unsuccessfully to insert the cathether which was really painful. They had to callout my Urologist who tried four timea to get the cat in. Eventually he decided to cut a hole below my tummy and inserted the cat which began draining the urine in the bladder.It was immediate pain relieve. I was booked for TRUS and TURP and scar tissue which was causing the blockage  was removed. The side effect post-op was total urinary incontinence. It was a horrible time as I was so embarrassed and had to pull away from all social events. I could not even sit in a church service as the leakage was constant. I did some research and bought a urinary clamp which reduced the leaking to about four pads a day.However it was painful. It was like having your penis in a vice grip. Finally I researched the AMS800 and decided to insert the device. It was a challenge and very costly as it is not a common procedure in Durban, South Africa. My Urologist had to get assistance from other doctors from Pretoria so you can only imagine the finacial cost as I work for the local council and do not earn much. However I am not sorry I had the device inserted. It dramatically reduced the leaking to one pad which is just a security thing in case of dripping after urinating. You will not go wrong with this device. It was a life saver. Iam still able to get an erection however I still suffer from retrograde ejaculation which burns when you ejaculate. In my opinion although the procedure and all the other procedures have crippled me financially due to my personal financial state. you will greatly benefit from using the AMS800. I hope you do the research and make a decision which will help improve your quality of life.This device gave me back my desire to live. Regards Francis.

    God bless.

  • Thank you so much for the response Francis123. You helped more than you know. 

    Jim

  • There Is Hope

    I've be battling Prostate Cancer for 15 years, from seeds to Casodex to Zytiga with VERY MINIMAL SIDE AFFECTS. My recommendation is to join a support group in your area, and go to the Prostate Cancer Research Institute conference in Los Angeles every September. The best advice on up and coming Procedures, Drugs, and Diagnostic tools in the country, HTTP:// PCRI.ORG

  • Hi Cajun1949,

    138JOA here. I had radical robotic surgery just over 2 years ago. No metastisis according to the histology report, although since then I have had 3 strictures at the bladder neck/urethra where they re-attached the bits. I put this down to my negligence in not self catheterising as the Urologist instructed. I do so now on a regular basis (2 or 3 times a week) .The last one was 46 weeks ago and no problems to date (touch wood). PSA >0.01, no leakages (inn fact very few since the operation March 2014), but I note you refer to a staple that was left in after the operation. As far as I know stitching rather than staples is the norm in UK, and the catheter is removed after a week (Christie Manchester). I keep as fit as possible, swimming, walking and cycling. I believe that doing so is beneficial to the waterworks of the body. I am 68 going on 69.

    Reading other correspondents it would appear that there are applicable options for you, and clearly you need expert advice. In UK the PC Support Group networks are well established and a great help to those blokes with PC who suffer issues. Try and get in touch with your local one.

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