I have (had) prostate cancer
Background: 61 years old, white male, 6’2”, 250 lbs. Smoker- ½ pack a day/I take medication for high blood pressure. Retired US Army SGM- 32 years. Currently in my 9th year working at a college. I sit behind a desk all day, but manage to work out a couple of hours a week.
This all started with a 5.8 PSA. My PCM doctor, who works at a military post, put me in for a urology referral. That referral had a urologist listed that was retiring and not taking new patients. Had to request a new referral form. I had the new form but couldn’t make an appointment with the urologist until they got the form directly from Tricare. For whatever reason they couldn’t accept the form from me.
The urologist, who was very personable and informative, told me that a biopsy was the best way to determine if I had prostate cancer and go from there. He performed a digital rectal exam and then sent me to the front desk. A date was set for the procedure and I would receive a call from the hospital for a pre-op appointment prior to the procedure.
They determine I need an EKG based on a high blood pressure reading. Instead of having it done at the hospital I opt to have it done on post so I don’t have to deal with Tricare and if they will pay for the EKG. I contacted my PCM and he scheduled an EKG.
I go get the EKG. Guess what, the doctor reading the EKG won't clear me for the biopsy procedure due to an abnormal reading. I contacted my PCM and he put me in for a cardiologist referral. I had to cancel the biopsy date because there's no way to get everything done and get the results in time.
They do an echocardiogram and set me up for a stress test- for another day.
I do the stress test and get cleared for the biopsy.
Later on I got a bill from the doctor that read the echocardiogram, because he didn't accept Tricare.
A new date is set for the prostate biopsy.
That date had to be canceled because we were told by Tricare that since the procedure would not take place in the same building listed on the referral form that it wouldn’t be covered. Basically the urologist's private practice wasn’t located in the hospital where the procedure would be performed. We got my PCM involved and ended up getting another referral for the procedure.
Another new date is set for the biopsy, which will be on a Monday. I have to be at the hospital at 5 AM.
Sunday prep- drink prescription laxative to clean out your colon for the procedure; clear liquid diet; nothing after midnight; shower with special soap (germ-killing treatment that will reduce your risk of getting an infection); fleet enema early Monday morning and take another shower with the special soap. First time I ever had an enema (I watched a youtube video for pointers). In my opinion the enema was over kill and not needed. What did I learn- run hot water over the enema to warm it up a little- trust me.
As previously stated- it started early and I was the first one to get worked on. I’ve had several colonoscopies and the procedures were basically the same. Strip, put the gown on, more paperwork, IV and several people asking for your name and DOB. The one thing I’ve never seen before was when I was being wheeled to the operating room and seeing the different OR’s with all of the people that would be in the OR lined up next to the door waiting on their patient. The OR was cold enough to store meat in, but wasn’t an issue because they soon put me under and it was lights out. I was released before noon that same day.
Biopsy side effects.
I pissed blood for a week and pooped blood for a couple of days. The first time I pooped was kind of alarming seeing that much blood coming out of my butt. There was no pain however. What really freaked me out was when I had sex 10 days after the procedure and came blood. The doctor did tell me to expect this to happen.
On 18 OCT 2021 I’m in the urologist office. He hands me a copy of the biopsy results and tells me I have cancer. As he is explaining things to me I kind of zoned out for a bit and started taking some deep breaths. I don’t think anyone is ever totally prepared to hear “you got cancer”.
Out of 12 samples taken from my prostate, 8 were cancerous and 4 were benign. My Gleason score was 3+3 =6. I had done some research about this prior to the appointment, but did a lot more after I got back home.
The urologist laid out several options to include watchful waiting and active surveillance. His recommendation was to remove it- radical prostatectomy, which he performed by going through the abdomen. He said I had the lowest Gleason score you could have (good thing) and the cancer was probably contained strictly in the prostate. Take it out before it spreads, but also seek guidance from other medical professionals for a second opinion. In my case I had some time. I contacted my PCM and got a referral for an oncologist.
I went with my wife so she could ask questions as well. I went to this appointment thinking that radiation therapy was the route I would take versus a prostatectomy. I was concerned about incontinence and erectile dysfunction. It seemed overall to be less intrusive. However, the oncologist was totally in favor of having a prostatectomy based on my biopsy results and age. He stated the surgery definitely had its issues and side effects, but radiology was just as bad and long term. He said I would deal with the surgery issues in the short term versus radiology and its issues possibly lasting the rest of my life with no guarantee it would get rid of the cancer in its entirety. He recommended that I find a urologist that could perform a robotic assisted radical prostatectomy. There would be less down time, less trauma to the body and less nerve damage. I contacted my PCM for another referral.
Urologist number 2 appointment.
He was a man of few words. Looked at the biopsy results, performed a digital rectal exam and told me to schedule a surgery date with the front desk. I asked him if he considered himself an expert with the equipment used for the surgery. With no expression on his face he stated yes, he was.
Surgery prep day.
Same as above. Cleanse the colon and shower with the special soap. Clear liquid diet, nothing after midnight
20 DEC 2021. Got up early, another fleet enema followed up with a shower and then to the hospital by 6 AM. More paperwork, strip, don the gown, IV and being asked my name and date of birth by everyone on that floor of the hospital. They wheel me into the OR, which is where I see the machine there going to use for the first time. Overall the entire room looked really high speed and technical. Once again it was lights out and game on.
They wheeled me in after an hour in recovery. I don’t remember anything until waking up around 3 PM that afternoon and feeling really out of it. Sometime later I got served food, which I had to force myself to eat what I could. It was the proverbially rubber chicken meal and was awful.
After eating a few bites I did an assessment of my penis, which had a tube running out of it to somewhere under the bed. My wife comes to check in on me and shows me a video she took of when they first rolled me into the room. Absolutely no memory of it.
She stayed a few hours and then left. Shortly after I fell asleep, which was the beginning of my ‘Night in Hell’. I had severe abdominal pain (bladder spasms) that no amount of painkillers could help. All I could do was shallow breath like a woman giving birth does. That was it, deal with it as best I could and suffer through it. It lasted hours and was the first of several more to come. It was a rough night with no sleep.
21 DEC 2021- out processed. I was given all sorts of informative papers like how to clean and maintain a catheter. They sent me on my way with a few day and night pee bags for the catheter. On the ride home I felt every bump in the road. Just felt very tired and uncomfortable as hell.
Moving around was a slow go. I started by slowly shuffling around the kitchen island. I spent my time either resting in front of the tv, going around the kitchen island or emptying the pee bag. My wife helped me with the catheter a lot. Changing it out, cleaning it and emptying it. She also helped with getting in and out of bed. I needed a lot of help and am very thankful she was there for me. After around 3 days I was able to bend over a little and get around better and didn’t need as much help. I didn’t have any more bladder spasms after the 3rd day as well. I started walking down the street (not far) once a day. Just took it slow and easy.
Overall what I thought would be a major pain in the butt, the catheter was not as bad as I was expecting. I had to drink enough water to flush the blood out and stay hydrated. On the bright side I didn’t have to get up to go pee after I went to bed.
28 DEC 2021- follow-up appointment with the urologist.
This was the day they removed the staples from the 5 incisions on my stomach and removed the catheter. I was laid out on the examination table and feeling nervous and exposed. I actually broke out in a cold sweat. The nurse told me to relax, which actually made me start laughing. The staples came out first with little discomfort. Next came the catheter, which is what I was really dreading. She told me to take a deep breath and started pulling, which took a little longer than I thought was possible. It was a weird feeling, somewhat uncomfortable, but when it was out it was over. They had a plastic urinal bottle ready for the pee that came out immediately when the catheter was removed. There is no way around it, you will leak. After that I had to put a diaper on and get dressed. The doctor came in and told me they got all of the cancer. I felt lucky and blessed.
Incontinence, my introduction to male incontinence associated products and kegels.
A male has 3 different valves that control the flow of urine. A prostatectomy removes 2 of them. I don’t see how any male that has this surgery will not have incontinence. 100 percent will have issues. How long it lasts is the only variable.
1st week. I wore an extra absorbing diaper at night and a regular depends diapers during the day. On average I went through 2 per night and 2 per day. I leaked everytime I sat up. I couldn’t make it to the toilet without leaking. I leaked walking more than 10 to 15 feet. I leaked everytime I farted. I did 3 sets of 10 kegels (for a 10 count) per day while sitting on the toilet.
2nd week. I started wearing a pad during the day and putting toilet paper in between me and the pad to cut down on changing pads. I wore regular depends at night, getting up almost every hour to change the toilet paper (not the diaper). I started doing 4 sets of 15 kegels while standing in front of the toilet (everytime I squeezed I would leak). I did the sets 3 hours apart- 9 am, 12 , 3 and 6 pm.
3rd week. I started wearing a pad at night, still getting up almost every hour to pee. I didn’t need to change the toilet paper out everytime. I could fart and not leak for the first time. I went back to work for 5 hours a day. That’s all I could handle. Sitting was uncomfortable. Made several trips to the toilet. They let me wear my loose workout pants, which didn’t bind as bad. I added 20 flicker kegels (hold for a few seconds, release, repeat) after each set of regular kegels. Got to where I could sit up and not leak (mostly).
lighterwood67 Member Posts: 351 Member
Well, thanks for sharing. No two are alike. My RP was in March 2018. At this time my cancer is undetectable; I am continent; I am intimate with wife. Best of luck on your journey.0
Yes, thanks for the excellent description of your experience.
I agree with Rob that the biopsy routine was a bit 'over the top'. Like everyone else undergoing this procedure, I had to clean up my innards, but the actual procedure was done using just local anesthesia in a clinic (not a hospital). A nurse kept chatting with me during the (30 min?) procedure. The urologist also prescribed an antibiotic to minimize infection.0
Clevelandguy Member Posts: 825 Member
My biopsy was done in the doctors office with just a local, just a little pinch when he took the sample, no infections afterwords. As far as leaking after surgery, there are various men here that have result’s ranging from no leakage like Lighterwood to some that constantly leak all day long. Thats the one thing about Pca, there are no consistent results. Still doing my quick pulse Kegals every day eight years later, just drip a drop or two once in a while. Good luck on your journey……..
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