Newbie here

Hello all PC survivors and loved ones, my name is Charlie and I'm new to this forum. I heard about it from another forum that I had been visiting that seemed not very active.

Let me tell you a little about my PC journey.

I'm 59. My brother, who is 2 years younger, was diagnosed about 5 years ago, and was one of the first people in the Rochester, NY, area to have DaVinci surgery. My father also had prostate cancer, but was never treated for it. Sadly, he passed 7 years ago at age 77 from another type of cancer.

So I had been dutiful about seeing the urologist twice a year. He always told me that although my prostate was a bit enlarged, there was no suspicion of cancer.

In May I went for my semiannual checkup. My PSA was only 1.4. Nice, right? Well, not so fast. The DRE revealed a "bump" that the doc had not noticed before. Subsequent biopsy showed a number of positive, moderately differentiated spots out of 12 samples. The Gleason score was 6 (3+3).  DaVinci surgery was recommended because:

a. Watchful waiting would not do me much good because my PSA was registering so low. I would need to have a biopsy every six months if I deccided to wait it out.

b. I was healthy enough to tolerate surgery.

c. Radiation now would preclude the possibility of surgery later.

So I went ahead and had the procedure done on June 16. Everything seemed to go well. The catheter was scheduled to be removed on June 26.

On about June 23 (coincidentally my 30th wedding anniversary) I noticed a problem with a bowel movement. Without getting overly graphic about it, let me just say that #2 was oozing from the opening where only #1 is supposed to come out. Needless to say, this was terribly painful and distressing.

My cystogram on June 26 revealed a fistula. Well, now I knew what it was called, but I also knew that it wasn't good. The doctor said that he had seen this only once before, out of hundreds of daVinci's he had done. (How lucky can a guy get?) He recommended a change to a "low-residue" diet, stool softening medication, and the retention of the catheter for another three weeks to allow it to heal on its own. If it didn't heal, he would have recommended sending me to the Leahy Clinic in Boston for bowel repair surgery.

Fortunately, it seems to have healed. The catheter is now just an evil, distant memory. However I continue to struggle with incontinence. I'm using about 6 pads a day, in addition to 1 or 2 Depends.

I'm trying to be patient, but I'm feeling a lot of frustration. I was doing the Kegels faitfully, but have now dropped off somewhat as they don't seem to have any effect. As of yesterday, the doctor says that if things don't improve in a couple of weeks, they have some machine in his office that helps you exercise your pelvic floor, and he would recommend that for me.

Personally, I'm glad to be back at work, although I had to move my cubicle to one closer to the men's room. What I miss most are my four or five weekly trips to the gym. I just don't feel comfortable in a locker room or a public shower.

Thanks for listening. I'm hoping to meet some guys here with similarly interesting stories, and possibly gain some encouragement and insight.

Peace to all,

-Charlie

P.S. There's an error in my profile that lists my age as 66. I'm really 59. I have since fixed the profile. 

 

Charlie,

If it makes you feel any any better, except for the fistula, you really aren't doing too bad.

You wll read some guys on here who never had any incontinence, but they by far the exception. It seems the average is somewhere around 4 to 6 months, some up to 8 months.

I am 4 months out, and down to 1 pqd. I am hopeful that I will be down to a pantyliner in the next 3 or 4 weeks.

The biofeedback device will be a good exercise to insure that you are doing kegals correctly. They do help initially, but it seems that after 2 or 3 miths, that your body begins doing a constant kegal, exercising itself as it were.

Are you dry at night ? If so, that is a positive sign as well.

Welcome to the forun. Sorry you had to join us, but I think you will find we are a fun grouo, and there is a lot of activiuty here.

I should add that I seem to be a little dryer at night than during the day. At least when I wake up at 2 am, I can sense that my bladder's full and if I run the the bathroom, I am able to use the toilet.

-Charlie

Welcome aboard Charlie,

I have to say that is pretty remakable recovering from the fistula as well as you have. Glad no surgery was needed from that problem. Also I can relate to the proximity of the bathroom and the gym, although my workout gym is in my garage. When I go on the road I have to use the restroom as quickly as possible when the urge hits. But your progress has been pretty significant and I know it is frustrating, but hang in there as it will get better. I have said before on here that my healing timetable must be in the hands of someone other than me.

Michael

Thanks everyone for the enthusiastic welcome and encouraging words.

I think I'd like to stick around here and learn.

-Charlie

Welcome, Charlie.

and keep healing.

Dan

Hi Charlie do not forget that you have only been off the catheter for 1 month and it all takes time sometimes longer in some people than others