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PROSTATE CANCER SUPPORT SITE

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Gregg F and Gail live in Florida, USA. He was 54 when he was diagnosed in November 2007. His initial PSA was 10 ng/ml, his Gleason Score was 6 and although he says he does not know his staging, it seems from his story that he was staged T1c. His choice of treatment was Radical Laparoscopic Surgery . Here is his story.

 THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN NOVEMBER 2009 SO THERE IS NO UPDATE.

In August of 2006 during a routine annual physical my PSA was found to be 5.5 and my G.P. referred me to a Urologist. The previous two years' PSA tests were 2 and 2.5. At that time I had no symptoms of prostatitis. In late August of that year I came down with severe crippling pain in both feet, and at the same time symptoms of frequent urination, sudden urges to pee, and weak stream. My G.P. put my on steroids (no relief), I was sent to a rheumatoid arthritis specialist. I was treated for prostatitis and possible infection with Leviquin. Interestingly there seemed to be a correlation with severe foot pain, similar to gout pain, with the onset of the symptoms of prostatitis (weakened stream, frequent urination). Both symptoms improved with time and a two week does of Leviquin, but the symptoms recurred together a few times over the next four months.

The foot pains got so bad in both feet that for a few days I literally could not walk. My urologist felt it was possible there could be a connection, but had never seen it before, the rheumatoid arthritis doc said there was absolutely a connection - inflammation. I also had and MRI scan of the feet that told the orthopaedic guy nothing

Steroids did not help, I should mention that I am 6'4", 265 pounds and very active. I mention the foot pain connection because I would love to know if anyone else with prostate problems has the same situation. In any case the foot pain eventually went away and I was now on PSA tests every four months. By the time it got to 7 the urologist did a biopsy.

This was done in an outpatient clinic. I was put under and 12 samples - hollow core needles - were taken.. Diagnosis - No cancer. I will mention that I had a great deal of clotting from this biopsy and urination for about 12 hours was the most painful thing I have ever done. I was peeing out what looked like small turkey giblets. I was so afraid of permanent clotting that I kept pushing water - so I was peeing a lot and screaming a lot in the bathroom. By morning things were ok. The urologist later said that I should have called him and he would have met me in his office that night and put in a catheter and flushed the bladder out to get rid of the clots.

The negative biopsy meant taking frequent PSA tests - every three months and a year later the PSA reached 10. The urologist told me I had to have another biopsy.
This time I had a Gleason Score of 6 - one sample showed cancerous cells. We asked for a second opinion and sent the slides to Johns Hopkins. They confirmed the diagnosis and in fact found suspect cells in a second sample. By the way the clotting and peeing pain were minimal after this biopsy.

We sat down with our urologist for over an hour and went over all our options.. I then read a few books. Lots of things on line (never found this site until after surgery). My own urologist only did open radical. After much reading and talking to many friends and associates I had decided two things.

1. I was not afraid of the cancer - but the potential side effects of the cure ( ED and incontinence)
2. I would have radical prostatectomy - either robotically or laparoscopic.

I had a good friend that was taking his sister for cancer treatment at Moffitt - in Tampa and another friend being treated at MD Anderson for Melanoma - in Texas. Both were very pleased with the facilities. I researched surgeons with the most experience and opted for Moffitt - two hours away from us (we live in Fort Myers) and Dr. Pow-sang had performed over 600 laparoscopic radicals. Talking to Pow-sang, he felt that his experience with direct laparoscopic surgery outweighed the benefits of robotic. Gail and I agreed and we therefore agreed to have him perform the surgery.

After consulting with the doctor his assistant sat us down in a consult room.. She went over pre-op procedures (fasting the day before the surgery, what time to arrive etc.). She then asked me if I had ever taken Viagra. "No", was my answer. She then told me the doctor wanted me to take Viagra on staggering days for one month before surgery. I jokingly asked what she meant by "staggering" and she said every other day. She then left to get me the prescription.

Once she left the room, Gail turned to me and asked, "Did she just tell us we have to have sex every other day until the surgery?" "Yes, indeed she did," I replied.
"You better asked her again when she comes back." Upon further inquiry we were told I should get an erection every time but we did not have to have penetration sex.

It was about 7 weeks until surgery and we started on the Viagra a few days after coming back from Moffitt Cancer Center We both figured we might not have sex for a long time after the surgery so we made the best of the next seven weeks.

A week before surgery we went up to Moffitt for blood tests and gave a urine sample. Instructions for the day before were repeated. After coming home I looked up Prostate Cancer on YouTube and found a one hour film of the Robotic Surgery. I was glad to watch the operation - it made be realize how major and delicate the surgery is. So much was depending on the skill of the surgeon.

My surgery was on Friday, March 14th. On the thirteenth I was to do without water or food all day. I was to do an enema at 4 pm and then again the morning of the surgery. I came home from work a little late and did the enema at about 5.

We had to arrive at Moffitt at 9:30; surgery was scheduled for 1:30. By 1:15 we were called in and Gail and one of our close friends came into the pre-op room with me. By about 1:45 I was watching the clock as the anaesthesiologist told me I would be under in a few moments.

I woke up about 30 minutes before being brought to a private room around 8pm. I was told surgery lasted 4 ½ hours.

I had a Foley catheter in my penis and a vacuum drain in one of the five incisions in my belly. The doctor came in and told Gail and I that everything went well, that the prostate, while large, looked good and he was confident that the cancer was contained in the prostate.

I slept well though the night but woke up often to drink water. I was having spasms in my bladder that were very painful - and the medicine for that (Ditropan) makes you feel dry. Except for the occasional spasm, I had no pain so declined any pain pills. It was sore to sit up , but really no major pain. Right after breakfast I got up and walked around and around the hospital. The catheter bag was rather large and I carried it with me.

A nurse came in to teach us how to use calf mounted Foley bag. It was actually quite a humorous picture. A pretty blonde nurse and my gorgeous wife staring at my penis and discussing taping versus an elastic strap - all quite matter-of-factly and without any discomfort on my part or apparently theirs

The tube coming out of the penis is not as bad as I thought it would be, but it got worse as the days wore on. Basically there is about five to eight inches of a tube coming out of the end of your penis ending in a "Y". One end of the "Y" is for the balloon in the bladder that holds the catheter in place, the other end of the "Y" is for connecting to the leg bag or the larger bag used at night.. There was an irritation at the end of the penis exacerbated greatly by walking . I absolutely could not wait to get the darn thing out. I did find that putting some ointment at the end of the penis helped.

One tip - for the night bag I stuck a regular wire hanger between the mattress and the box spring - with only an inch of it protruding out, This gives the hook of the night bag something positive to hang on.

By Wednesday I ventured back to work for about for hours - only five days after surgery. I then went in every day for a few hours until the following Wednesday. The catheter bag straps comfortably to the lower calf and is only a problem when it gets full and heavy - but is easy to empty. I did find I leaked somewhat but that was easily remedied with a pad. If my staff didn't know about the bag, they never could tell visually.

My real problem was that it was uncomfortable to sit upright at a desk, and uncomfortable to walk. If I stayed too long I would start to get spasms, so I would go work in an easy chair at home. I was taking no pain pills and no Ditropan at all.

On the Wednesday, twelve days after surgery, we went in for an x-ray to make sure the bladder was not leaking ( it was not) and to get the catheter removed. First the nurse filled the bladder though the catheter tube already in the penis with mild saline solution. She then deflated the balloon, told me to stand up and hold a bucket under my penis and on the count of THREE she would pull the tube out.. She pulled on "TWO". And the saline solution came pouring out. She had told me to try to stop the flow once. ( I was able to) .

They gave me a diaper and an absorbent pad to wear and I was told that I would be leaking for some time. I would advise bringing some high quality adult diapers with you when you go to get the catheter out as the diaper they supplied was not very good.

Gail and I also went over the results or the pathology - the cancer was all contained in the prostate - but there was a small sample that was close to the margins - but contained. So the prognosis was excellent.

For the two hour ride home I was fine - I could not tell I was leaking or peeing in my pad. But by night-time I was very discouraged - I had yet to actually go the toilet and pee - it was all coming out "at will". I never had the urge to pee. The first night I wore a diaper with a pad and got up in the middle of the night to change it. Still no urge to pee.

It is now Thursday, a week after the catheter was removed and almost three weeks from the surgery date, I still never really have the urge to pee. The first day after the catheter was removed I went to a meeting. I purposely did not drink anything that morning; I put on a diaper and a pad. As soon as I got to the meeting I changed the pad. The meeting started at 9:30 and I sat for 1 ½ hours. When I stood up, my bladder became a mini Niagara Falls and poured down my leg after passing up the apparently already saturated pad and diaper.. I was able to escape unnoticed with a complaint of severe pain and went home for the day.

I sat in gym shorts in the back yard trying to understand what post prostate surgery bladder control was about. When I am at home and sitting for a while I cannot stand up and have any bladder control. I can literally grab myself until I get to a toilet - but this is the only way to hold it in.

At night for the past four nights I wake up not so much with an urge to pee as a slight pain - which I have learned is a full bladder.. I am able to hold myself with my hand and get to the toilet. It is this way that I have had a dry pad for the past four nights I am learning to travel with a bag with extra pads, diapers and a change of pants for any accident. I will say it is getting better, but very, very slowly.

The doctor has prescribed Viagra three days a week for the next six months. This is his standard protocol for post surgery. He told me not to expect an erection for at least a month and if I do get one not to have sex for 45 days at least

I still have pain at the base of the penis - I am assuming where the prostate was, and lately weak blood stains at the beginning of urination in the morning.

I am back to work full time - but tend to move around as little as possible because any movement - especially going from sitting to standing makes me urinate.. So does coughing, passing gas or laughing.. I am more comfortable working at home because of the fear of a public accident.

When I am out I carry extra pads in my back pocket and a plastic grocery bag to dispose of the used pad. I change often so as not to have a show through accident.

 

UPDATED

April 2008

 

 

Wednesday April 9. 25 days since surgery, 14 days since catheter removal. I have gained some bladder control, at least to the degree that when, at home, I can go through the night with only minor leaks. I get up once around 2 AM. The feeling of a full bladder is not like the sensation that I had before surgery but more of a pain.. I am able to get up, and with concentration, get to the toilet beofre voiding. I am also able to do this at home when sitting for a while, but have not been able to do this at work at all - too much moving around. I am changing pads around six times a day at work.

When I come home I shower and put just a pad in the under pants. I wear a Depends AI pant during the day. I keep a pair of pants to change in to if I need it at the office - but have not needed it this week at at all. This is not because I have gained control but because I do not drink much and becuause I change the pad often. I have to be careful, if I get too busy and involved in a project, I will forget to change often.

I am fortunate to have great support from my wife and staff. every one at the office knows what I am going through.. I bring a small gym type bag with extra pads, plastic grovery bags for soiled pads, a change of underwear, and wet wipes. I keep it stored in the bathroom closet. I still have a minor ache in an area I suspect where the prostate was, also some irritation of the uretha. I perform Kegel excercises at least five times a day.

I am feeling improvement - even if only at night and at home - but it gives me hope I am on the right course..

 

UPDATED

July 2008

 

 

Now it has been four months since the surgery.

I wear one pad during the day; one for the evening; and generally do not wear a pad at night.. On weekends it may be more - working in the yard or moving around a lot will cause more leakage. I am confident now that the incontinence will eventually go way.

On the Erectile department still no success. I am on 50 mgs of Viagra 3X week. My GP tells me that I can take 100 if we plan to have sex. Tried that last night - still no erection. One of the things I worried about before the surgery was that maybe I would not WANT to have sex anymore after the surgery - this is not true.. My wife and I still have good sex - I leave that to your imagination, I enjoy myself, and so does she.