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    Old 02-23-2007, 11:57 AM   #1
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    My EXPERIENCES AND TIPS on prostate cancer/surgery PART 1

    Hello all,

    I am writing this log to let others facing prostate cancer and surgery know of my experiences with the diagnosis and subsequent surgery, and my recovery thus far. I will tell of any problems I've encountered and the solutions I came up with, as well as feelings I've had over the course of this journey.

    I am a 52 year old gay male. I have a partner of 15 years who is totally responsible for my being diagnosed. He insisted that I go in for my big checkup which I should have had at 50. As I am really a procrastinator, he made the appointment for me, and so I went. The routine blood work revealed a PSA of 13.5! I was referred to a urologist who decided I needed a biopsy. This all took place at the end of October and beginning of November, 2006.


    The biopsy took place at the doctor's office. I was told I could drive myself there and back, but a friend insisted he drive me. That was a good thing! The biopsy itself wasn't really too bad. They insert a probe into the colon which is used to inject an anesthesia into the prostate, and then to take 10-12 samples using needles. It was slightly uncomfortable, and a few of the needle sticks sort of hurt. Before starting the procedure the doctor let me hear the sound the device would make so I wouldn't be startled as he did the procedure. This all took about 10 minutes.

    After the samples were taken I was told to just remain still for a few minutes. There was a strange sensation in the area....kind of a dull pressure. After a while I got up and was able to leave, but sitting in the car was uncomfortable. I squirmed a lot, and it almost felt as if I needed to have a bowel movement, but I didn't. I'm glad I didn't have to drive myself home.

    Since the biopsy is taken by poking through the wall of the colon I was told I might have some blood in my stool, in my urine, and in my semen. I did have blood in my urine for a few days, especially if I did a lot of walking. The blood in the semen occurred for about a month and in time going from a thick almost black color to normal. I had an uncomfortable feeling especially while sitting for about 4 or 5 days after the biopsy.


    The results of the biopsy came back in a few days. They showed cancer on the left side of the prostate and none on the right side. My Gleason's score was (3+3=6). This was a middle-of-the-road grade of cancer which was good. In the Gleason's score, the numbers which are added together indicate agressiveness of the cancer cells....with 1 being least agressive and 5 being most agressive. The first number indicates which type of cell is more prevalent, and the second number indicates the next most prevalent cells.

    I was sent for two other tests: A full body bone scan with contrast, and an abdominal CAT scan. These were done to see if the cancer had spread anywhere else. Both came back clean.

    Treatment options were discussed, and based on my age and relative good health, radical prostatectomy was my best bet. I decided to have traditional surgery, as opposed to robotic surgery, and a date was set for 1/5/07. This allowed the required 6-8 weeks of recovery time from the biopsy, and got me past the holidays.


    On the morning of my surgery day I woke with a scratchy throat and really didn't feel well. But I proceeded to give myself a Fleet enema and then head to the hospital. I arrived and checked in, and the nurses began my prep. I answered all the questions, and then they started checking me over. It turns out that I had a fever of 100.5, and the surgery was cancelled.

    It was a good thing that the operation was cancelled, because I ended up with one heck of a cold for weeks! I had 2 courses of antibiotics and finally recovered in time for my new date, 1/26/07.

    This will conclude my first entry to this log. The next entry will discuss the goals of surgery and some side effects from the surgery. I'll talk about my actual surgery and the hospital stay.

    Until then.....keep the faith!

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    Old 02-23-2007, 01:04 PM   #2
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    My EXPERIENCES AND TIPS on prostate cancer/surgery PART 2

    Hello again.

    This is the second part of my log covering my diagnosis and subsequent surgery for prostate cancer. I am writing the log at 4 weeks post-op, and will tell of my experiences to date. See Part 1 for other info.


    Your urologist will discuss the goals of the surgery which are, in order of importance:

    #1 Curing you of cancer

    #2 Maintaining urinary continence

    #3 Maintaining potency

    I was told that continence usually comes back in anywhere from a month to several months. Most will be 100% continent, some may have some leakage especially if exerting yourself as in sneezing, caughing, or lifting something heavy.

    Potency is another issue. Apparently the nerves which control erection run along side and are attached to the prostate. In the 'nerve sparing' procedure which is the "gold standard" these days, the nerves are separated from the prostate. If they detatch from it easily, it is a good indication that the cancer is not close to the edges of the prostate. If they are "sticky" and don't come away easily, it is more likely the outer edges of the prostate are involved, and the decision may be made to take the nerve. This has to be determined during the surgery.

    I was pretty sure that I would be cured of the cancer. I was pretty scared of the continence issues. It would not be nice to have to wear a pad or diapers the rest of my life. But I was fairly certain I'd regain most of my bladder control, as was my doctor. The thought of being impotent was the most upsetting thing to me, but I was assured by my doctor that there is usually some degree of potency remaining, and now there are drugs like Viagra that can help.

    Along the lines of potency, your doctor will also tell you that after the surgery, you may be able to have an orgasm, but there will be no ejaculate. The prostate produces some of the ejaculate, and it will be gone. The seminal vessicules will also be removed, and they store ejaculate fluid made by the vas deferens, which will remain but be pinched off. So be prepared for that situation in the future.


    After having been sick on the original date for surgery, I was rescheduled for 1/26/07. That day I was healthy and the surgery went off as planned. I arrived at the hospital and was prepped. They started an I.V. on me and made sure I had no fever. I was wheeled into the operating room, where the surgical team was ready for me. I slid myself from the bed I was on and onto the operating table. The table has 'wings' on which my arms were if on a cross...and a strap was placed over my mid-section. I was covered with wamed blankets. I felt a strange sensation like I was getting slightly dizzy. I asked the ansethesiologist if she had given me something, and she said yes....and the next thing I knew I was in the recovery room!

    The surgery took about 2 hours or so. I woke up with no pain whatsoever, not even a sore throat from the breathing tube. I was a little loopy from the drugs. My partner came in and said he spoke with the surgeon and that everything went just according to plan. The nerves which control erection were both able to be spared, and everything else was OK. I was happy to hear that.

    I ended up waiting for about 3 hours for a room, and finally got wheeled out of the recovery room at around 6 PM. I was hungry, so I ordered a chicken Caesar salad (this hospital uses a menu like a choose and call, and they deliver it about 30 minutes later). I ate, and my partner was with me until visiting hours ended. The nurses kept me pleasantly painless. Finally at around 11 PM after a round of musical room mates, it was quiet. I was given my last dose of morphene for the night and a sleeping pill, and that was Friday first night in the hospital.

    I woke Saturday and felt pretty good...still no pain whatsoever. Before the surgery I figured that the catheter into my bladder would be the most inconvenient and/or painful thing of the whole ordeal. It was not painful, but you really have to be aware of it lest you pull or tug at the tube, or try walking off without taking your collection bag with you!!!! The nurses again kept me very pain free. I had breakfast, then my partner arrived...then my mom and sister (who is a nurse for 40 years) and my brother in law (who is a urologist) arrived. We visited for a while and then I needed to sleep.

    I napped, and then woke for dinner. Again, still pain-free and pleasantly drugged...this wasn't too bad. I got out of bed that evening for the first time, and walked the halls of the hospital a little bit. The incision did not hurt very much at all, but the catheter was annoying. It felt like it was poking me inside somewhere. was not horrible. My nurse made me a very stiff pillow to hug against my incision if I needed to cough or sneeze...or be sure to get one for yourself.

    Another good pain. A final dose of morphene around 11 PM, and that ended day 2.

    Sunday morning I awoke feeling OK, and I ordered breakfast. I got out of bed to take a walk and met one of my doctors at the door! He came to check things out, and to remove the drain that was in my belly draining any leakage away from the surgury site. He told me to sit down and it would just take a minute. So he snipped the stitch that was holding it, and said I'd feel a "little tug". It was a little more than a little was more like TUG, TUG, TUG..... and it was out. It kind of hurt, and felt like nothing I'd ever felt before. He was talking with me, and I began feeling like I was going to pass out....which I did! It really didn't hurt THAT bad....but I hadn't eaten...had just gotten out of bed....and I'm a big chicken when it comes to pain. Oh well....

    The doctor said I could go home that day if I wanted to, but he fainting incident didn't give me a lot of confidence, and I really didn't feel well after that. So I decided to stay another night. The day was ok...again pretty much pain free and pleasantly drugged. I ate, slept, ate...and finally got to look at "the damages"...the incision and the catheter. I was told by my sister that I should keep the catheter really clean if it hadn't been already done (which it hadn't), so I decided to clean it. I used a basin with some warm soapy water and a wash cloth, and cleaned myself off. The catheter had gotten clumped with blood, like I cleaned everything off and it felt good to do so. Plus, I found out that I could handle the catheter without causing any pain or discomfort. That made me feel more confident to go home. The rest of the night was uneventful...just a walk around the hospital, and then off to sleep again.

    Monday morning came and I ordered breakfast. I told the nurse I was ready to leave, and she got the orders signed and paperwork done. While I was waiting for my partner to pick me up, I decided to get washed and shaved. While in the bathroom I suddenly felt "the urge" to have a bowel movement...first one since the surgery. So I took my time, and everything went well. I felt MUCH BETTER after that....there had been a pressure down there that immediately went away.

    I got dressed, the nurses gave me the things I'd need for home use....collection bags, a leg bag, and some anitbiotic ointment. My ride came and I was wheeled out to the car. All in all, not a horrible experience. The catheter was the biggest issue for me thus far.

    Well this will end the second part of my log. Next I will talk about preparations I made at home before the surgery to get ready for the recovery period. I'll talk about things I bought before hand, and things I found out I'd need after the fact.

    Until next time.....keep the faith!

    Old 02-23-2007, 01:24 PM   #3
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    My EXPERIENCES AND TIPS on prostate cancer/surgery PART 3

    Hello again.

    This is the third part of my log telling about my dealings with diagnosis and surgery for prostate cancer. See Parts 1 and 2 for more info.

    Now I would like to talk about preparations I made at my home to be ready for my recovery period after the hospital stay. I had some things planned and in place at home, and others cropped up after I got home and I had to deal with them on the fly. So hopefully this will help YOU to be better prepared for the expected AND the unexpected...kind of like a Boy Scout! So...away we go...


    I will now list things that I found vital to being comfortable both physically and mentally, as well as things that helped keep me (so far) free of any infection in my incision or urinary tract. Some things also helped avoid messes around the house. I'll give a brief description of what and why, and I'll probably touch on these things again as their uses came up.

    Things to buy:

    > Antibacterial soap, like Dial. I used this to shower with a few days before and the day of the surgery. I also am still using it and will continue to do so for a few days after the catheter comes out.

    >Antibiotic skin cleanser. My neighbor told me she read about this in an article in the AARP newsletter. I checked it out and went shopping. At a CVS store, in the first aide section, I found this stuff: HIBICLENS (chlorhexidine Gluconate solution 4.0%) I used it as directed on the package for 2 or 3 days prior to the surgery. Just a precaution against infection from bacteria.

    >Triple antibiotic ointment. This is used around the catheter where it exits the penis. I put a generous glob of it around the opening of the penis as well as an inch or so down the length of the catheter tube. You'll find out that that tube travels in and out about an inch or so as you walk and move about. The ointment keeps bacteria away, and serves as a lubricant for the catheter tube! I kept a tube in each bathroom that I might be using.

    >Hand sanitizer gel. I kept a pump bottle of this stuff near every bathroom sink. But don't use it just before putting ointment on your may sting. I washed my hands a lot before messing with the catheter...and used hand sanitizer afterward.

    >Antibacterial hand wipes. I kept these in all bathrooms to use in instances like after applying the ointment.

    >Disinfectant wipes for surfaces. I used these to clean up spills in the bathroom, on the toilet seat, and to clean the surface of my drainage bags and tube.

    >Water proof mattress protector pad. This was not only for protection of the mattress from urine and/or blood stains, but for peace of mind in knowing that if I did have a spill, I wouldn't ruin the mattress.

    >Disposable "under pads". I had these distributed in each bathroom. I kept one on the floor to catch any drips from the catheter while using the bathroom, and I also kept a few under me (and on top of the sheets) in bed. I put them on the sheet absorbant side up, and covered it with a towel. Now I had double protection from leaks or spills! I also had some on various chairs around the house just in case.

    >Underwear liner pads. These proved of little value in their intended adhere to the inside of regular underwear to catch any drips...but with the catheter in place they were uncomfortable. I found they worked well to cover myself to keep leaks from getting messy while I was sitting on the toilet. I'll cover this unexpected stuff later...when I talk about bladder spasms!

    >Disposable diapers. Yes....that's right, diapers. In my case (and hopefully NOT in your case) I had to resort to using them. My catheter leaked constantly and this was the best way to stay comfortable physically as well as emotionally. I have a 32 inch waist, but my partner very smartly bought the diapers sized L-XL...thus allowing room for the catheter to not be jammed against me. I used the diapers that are like baby diapers...with sides that wrap around. These turned out to work best as I could fit them to be comfortable, as opposed the the diapers that are "slip on" briefs. Also, the briefs didn't stop the dripping that would run down the tube...and it would then drip on my leg...the floor...etc. I kept a supply of diapers in each bathroom.

    >Catheter holder straps. This is the thing that is glued to your leg to keep the end of the catheter firmly in place. You don't want that thing pulling inside your bladder. The hospital used the kind that actually adheres to your skin, like a band-aid. The first time I showered at home one part of it unglued itself, and I had to resort to tape to hold it in place. This did not make me feel comfortable, as I was constantly afraid it would become totally detached from my leg and would pull (and cause me pain) inside my bladder.
    So I sent my partner out to the local SURGICAL SUPPLY STORE to get me another strap. He came back with a very nice that I highly recommend. The brand is DALE and the item number is 316. It is an elastic strap about 2 " wide that fastens to your leg with a velcro fastener. It has a GREEN velcro connector that holds the catheter firmly in place. (There is another holder of this type by a different company with a BLUE fastener, but my sources (nurse sister and brother in law doctor) say is not as good) In any event, I ended up buying a second one so that when I showered and one got all wet, I could change it with the dry one...and then let the first one dry for next shower.

    >MOTRIN. I used a generic Ibuprofen. This was used to control bladder spasms, which I'll touch on later. Also Tylenol or it's generic version acetaminophen, worked well too.

    >ATHLETIC TYPE WARM UP PANTS. I'm refering to the nylon pants that have snaps all the way down each leg. These were useful to wear around the house. The snap sides allowed me to put them on and have the catheter drain hose to come out. They were very convenient, and since my surgery was in January in New Jersey, they were nice and warm. I have the kind that is flannel lined!

    Things to acquire from the hospital:

    >TAPE. Nurses are always taping something to something. And they often leave partial rolls of the tape laying around. If they don't come back in a few minutes for it, toss it in your overnight bag and take it home. It has a multitude of uses. I used it when my hospital-applied catheter holder came unglued from my leg, and I used it a lot to help give a comfortable fit to my diapers!

    >BEDSIDE DRAINAGE BAG. My nurse gave me several of these...a large 3000 ML one for overnight (I tended to drain A LOT overnight...I drink a lot of water), a couple 2000 ML bags, and a couple small leg bags. I ended up using the largest one for overnight, and the 2000 ML one throughout the day while at home. I used the leg bag a couple of times with limited success. We'll touch on that stuff later.

    >CATHETER PLUG. My nurse was a sweet heart, and she had a lot of nursing experience. She got me a couple catheter plugs (she said they can be hard to start bugging your nurse for one right away!) They were very useful for showering. I would disconnect the bag and insert the plug into the catheter end, and take a shower without having to worry about the bag, or having a wet leg bag on me after the shower.

    >LEG BAG. As I mentioned before, I had limited success with the leg bag. It just didn't seem to drain properly for me, and whenever I took it off I would find the catheter tube was full (as my bladder probably was) and would drain quite a bit as soon as I attached one of the larger bedside bags. So...good luck with it.

    Now this will end Part 3 of my log. Next time I'll talk about my first days at home, and some surprises that cropped up.

    Until then....keep the faith!

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    Old 02-26-2007, 01:43 PM   #4
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    Re: My EXPERIENCES AND TIPS on prostate cancer/surgery PART 1

    ProstateC: thank you so much for sharing this information! I haven't checked further on, but how long before you felt you could return for work?

    Old 02-27-2007, 06:58 AM   #5
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    Re: My EXPERIENCES AND TIPS on prostate cancer/surgery PART 1

    I am just over 4 weeks post-op now. I am self-employeed in the handyman business, so I think I still have a couple weeks to go before getting back to work. My doctor said I can now start working out at the gym...but lightly...and if it hurts...don't do it. So...I'll see how it goes. Thanks for checking. Dan

    Old 04-14-2007, 11:46 PM   #6
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    Thumbs up Re: My EXPERIENCES AND TIPS on prostate cancer/surgery PART 1

    Originally Posted by prostateC View Post
    I am just over 4 weeks post-op now. I am self-employeed in the handyman business, so I think I still have a couple weeks to go before getting back to work. My doctor said I can now start working out at the gym...but lightly...and if it hurts...don't do it. So...I'll see how it goes. Thanks for checking. Dan
    Just wanted to thank you for your detailed posts. I hope that you are feeling better by now and you are permantly cured.
    All the Best, Jim

    Old 04-16-2007, 02:26 PM   #7
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    Re: My EXPERIENCES AND TIPS on prostate cancer/surgery PART 1


    Thanks for sharing your journey. Unless I missed it, I didn't see anything in your messages about a pathology report...

    Did you get your pathology results yet?

    The reason I ask is I was wondering if your pre-op staging resembled your post-op pathology report.

    Last edited by *tony*; 04-16-2007 at 02:36 PM.

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