My Prostate Cancer Journey

One Man's Journey With Prostate Cancer

I think it's time for an update. As I said in the last post, I was starting to reduce my Trimix injections and on October 25, after 82 injections I stopped taking them as I was finding that I was getting similar results with just pills. That's not to say that I was 100% back, but it was enough that the injections were no longer needed. Over the next couple of months with just 5mg of Tadalafil a day, things improved and became more like I was pre-surgery. The last part to improve was duration/stamina. But after 18 months since the surgery I can now say that I'm happy with where I am sexually post surgery. I think there is still some room for improvement, but I would estimate at a minimum, I'm 90% back, maybe a little better! At my next appointment in September, I plan to discuss the possibility of discontinuing the Tadalafil as well. I'm not in as much of a hurry to do that as I was the Trimix as I've had no side effects and it's just a small pill in the morning, but I like the idea of not having any regular prescription medications. We'll see.

I write this mostly to encourage other men out there that it's possible. This part of the journey can be frustrating in that it can take a long time. But 18-24 months is pretty normal for nerves to heal. It's easy to get frustrated about this and no one wants to think that he is permanently impotent, especially when in a relationship. To those out there having issues, I encourage you to, first and foremost, have a plan with your urologist. That was one thing that I really appreciate about my medical team is that we had a plan from day 1 to recover. And when pills alone didn't work, we moved quickly to the injections. And although that process wasn't exactly fun, especially find and maintaining the correct dosage, persistence paid off and healing did happen.

Once you have a plan, keep to it. It wasn't exactly fun injecting myself every 3 days, but that's what it took to get back to normal. Just like with the urinary incontinence, I decided that while there are no guarantees if I somehow did not recovery, it was not going to be because I didn't put in the effort. Do the work and give yourself the best chance to recover.

That's all for now. I'll post again when I have an update, whether good or bad.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

This will be a very short post but I thought it was worth giving an update because September 8 marked 1 year from my surgery. That also meant my 1 year checkup in urology including my first PSA since last December.

Thankfully, the PSA came back zero so the appointment was pretty quick and non-eventful. We mostly discussed my ED progress which is coming along on pace with the 12-18 month time frame she gave me. I told her how I was able to decrease the Trimix (Alprostadil) injections and that I'm having some level of success on just pills. My goal will be to reduce and eventually stop using the injections sometime in the next six months. But only time will tell.

I have another appointment for next September to do it all again. I'll keep posting here as I find updates to give. I expect that to be earlier than next September. Until then, always feel free to reach out with any questions or just to talk.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

Yes, it's been a while since I've posted but there are times when the journey is slow. I tell people that most of the timelines are in weeks and months rather than days. However, I think I have some enough to say to make a good blog post so here we go.

So what's been going on? Nothing dramatic and that's a good thing. I have been making slow and steady progress in recovery from the surgery. My urinary control is basically back to normal, or whatever normal will be going forward. I rate it at about 98% of what I was before surgery. I still have tiny leaks occasionally, but that's about it. I stopped using any kind of pad or protection about 4 months ago. The final straw was when I went on a multi-day trip with a 3 hour flight each way and forgot to pack anything....and had no issues. I've taken several trips since then including flying to the other side of the world and have not had any issues. I do have one recommendation that makes life easier in this respect: the material of your underwear. I found that cotton isn't the best fabric for me because if I do have a tiny leak it holds the moisture in and I feel more wet. I haven't worn cotton underwear in a very long time but I noticed it when I wore pads. I found my underwear to handle tiny leaks better than pads as the pads stayed more wet than my underwear. The underwear I use is made of a fabric called viscose which feels a bit like rayon. What I like about it is that it dries very quickly so if I do leak a tiny bit, I don't feel wet the rest of the day or feel the need to change. The brand I like is ExOfficio. You may find some other brand but the key is to look for a fabric that dries quickly. It will make life much better. There will be times you can't help but leak a little. Much like a lady whose had a baby, it can be as simple as a big sneeze. But for those tiny bits having good underwear can make a nice difference. Just a tip.

On the erectile dysfunction front, I also have some good news. I am making slow but steady progress with that as well. I remain on 5mg of tadalafil per day and I'm still on the Alprostadil/Trimix injections, but I have been able with some work to get erections without the injections. They aren't as good as when I do the injection and don't last as long, but the fact that I can do it at all is good progress. I have also been able to lower my dose of Alprostadil from .4cc/3x a week to .3cc/2x a week. While it took a while to find the initial dosage, about a month ago I found that it was too much. And too much isn't fun...it hurts. But I also have learned that if it does work a bit too well, that taking 120mg of Pseudoephedrine (Sudafed) can help make them go away. The few times I've had this issue I take it at the 2 hour mark and it helps. This isn't medical advise, of course, I'm simply reporting that it helped me and it might help other guys. But always check with your doctor before doing anything like this. But you can't have the conversation with your doctor if you don't know about it so hopefully this helps. Bottom line, my hope is that I will be able to be off of the injections within the next year as they aren't fun and not convenient at all (see my previous post for all my details on this). If you are in a similar situation to me, just know that healing is possible.

So what's next? I have my 1-year post-op appointment in about 6 weeks or so. I'll take another PSA that should be 0. As long as that's the case, I can continue my journey as it is now. If it is not, that could mean that some of the cancer was missed and I'll need to look at next steps such as radiation. But that's getting too far ahead. No reason to get into that until/unless it's necessary.

One final pointer. I found a very good community for prostate cancer patients, families, etc. Believe it or not, it's on Reddit, which is known for all sorts of crazy content but the community on /r/ProstateCancer is quite good. You will see me responding there as well as many other guys who have had just about all the variations of this stuff that's out there. It's a resource that I highly recommend to anyone looking to learn about prostate cancer from real people, not just doctors. Doctors are critical, to be sure, but to be in touch with guys who are actually going through this is really helpful. So if you think it will help you, by all mean, take a look.

That's it for now. I'll likely post an update after my next appointment. Until then...keep up the fight and keep learning!


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

Before I jump into the main topic, I'd like to give a short update on the rest of my recovery. My urinary control has steadily improved. I'd say I'm 85% of where I was pre-surgery. I rarely wear pads anymore and when I do they are very thin. I only wear one if I'm going out to a place where I may be standing for a long time or a place where there could be bathroom lines. But that's about it. I still don't know entirely how much I have or exactly when I'm totally finished but, overall, I'm doing very well on that front. The recovery for this is supposed to be about 6 months and I'm about 4.5 months from surgery so I think that's good progress. I still do daily kegels but only 1 session for 30 minutes. On the PSA front, I've now had 3 PSA tests and they have all been zero so that's good news as that means that it's likely that I'm cancer free. I have another one in September of 2024 as we continue to monitor this.

While I am making very good progress on the urinary control front, the erectile dysfunction part is a longer journey. I think I'm doing ok but recovery from this can be at least 18 months and, as I stated before, I'm about 4.5 months from surgery. I continued taking Tadalafil (aka Cialis) post-surgery at 5mg per day. While this dose pre-surgery had noticeable results, it did nothing post-surgery. At my first follow-up appointment, my urologist suggested that I double my dose to 10mg per day and 3 times per week take 20mg and see if I make any progress, which I did not. I had another follow-up 2 months post surgery and explained the situation. I was then prescribed 20mg every day for a week. If I didn't see results I was to call back and we'd move to the next step. I didn't make any progress at that dosage either.

So the next step is another medication called Alprostadil. This was ordered from a compounding pharmacy who would mail me a kit. Like the Tadalafil, it's not covered by my insurance but, thankfully, it's not very expensive relative to many drug prices and I can pay for it with my Heathcare Savings Account (HSA). A vial which currently lasts about 6 weeks costs about $120 including shipping. It comes in powder form in a small vial. Aprostadil Bottle

Along with that comes a bottle of Bacteriostatic Water of which I put 5mg into the power solution via a syringe and shake the bottle to mix it up. At this point, the mixture needs to be refrigerated. When it's time to take a dose I load up some of the mixture in a syringe. This is a U100 syringe usually used for diabetics. It's a small needle, 31 gauge and about 5/16 inches long. The U100 refers to “units” which are .01cc so this can handle up to 1cc of liquid. Needle

Here's the tricky part: the dosage is a bit of trial and error. There's no way to know up front how much I'll need but I really want to avoid over-dosing which can cause priapism which is an erection that won't go away on its own. You may have seen the advertisements for ED drugs that say “seek medical attention if you have an erection lasting more than 4 hours”, that's priapism and it's actually dangerous (see the article for details) so no pressure here. I had a nurse appointment before I started using it and she suggested starting with 10 units (.1cc) and going up until it worked properly. More on that later. I did my first dose in the office with the nurse at 10mg. This was probably going to not be enough but the goal here was to learn how to use it and see if I felt anything at all. I did and so I started using it a home.

I start by cleaning the top of the bottle with an alcohol pad. Then I load the syringe with the dose (or the guess of the dose). Next I prepare to inject the solution, (oh, did I mention where?) into the side of my penis. Ouch! The idea is to alternate sides and avoid a vein. So I pick an area an clean it off with an alcohol pad, insert the entire needle and inject the dose. After a brief shudder I can then start to try to get an erection. Like the pills the injection doesn't just create an erection. To get one requires normal sexual stimulation. The medication just allows the bloodflow to occur by relaxing the blood vessels. When I get a correct dose it takes a 5-15 minutes to get an erection going. The trick is how long it lasts. As I worked to find a good dose the longest I had was about 2.5 hours. That's about as long as I'd like as I'm not interested in pushing the 4 hour priapism window as that involves a trip to the emergency room.

I do this every 3 days or so. The goal is 2-3 times per week. I log the dosage and the results to help find the correct one and to have a record of what I've been taking in case that's needed later. My penis has a noticeable ache for about 4-6 hours after the injection. After that, the injection site is a bit sore to the touch for about another day at the most.

I can't say I look forward to it but it's a necessary part of rehabilitation. Post surgery if you don't get erections going soon, it's possible that you may lose the ability for life. I could understand why some older men opt to not do this part but I had this surgery at 53 years old and I'd like the chance to rehabilitate. Each man needs to decide that for himself. But this lead me a very important question: Will I need to do this for the rest of my life? That was the primary question at my 3 month follow-up appointment. By that time I had settled on 30-40 units (.3 – .4 cc) as my dose (even now it's a range). Would I build up a resistance and have to do more? The answer was encouraging. If all goes well, this isn't a permanent solution. The idea is to keep things working while my body is healing. If I heal up well, the dose should be able to be reduced over time and (hopefully) eliminated perhaps only using pills, maybe nothing at all. I still take 5mg of Tadalafil which is the highest dose I can while using Alprostadil. How long will this go on? While I can't say for sure, it could be a year or more. As I said 18 months to recover is normal on the erectile dysfunction side and I'm only 4.5 months into recovery. Recovery from prostate cancer is a journey. Some parts are easier than others.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

It's been a while since my last post so I thought it would be a good idea to give an update on the urinary incontinence. Overall it is getting better, although it's tough to see that some days. It is still very dependent on physical activity. The more active I am, the more I struggle staying dry.

The best time, by far, is overnight. When I first got the catheter removed, I was getting up every 1-2 hours to urinate. Now, I'm getting up once a night which is what I was doing before surgery. In fact, this week I've stopped wearing any pads overnight and I've been fine. I've been sleeping on a towel just in case, but there have been zero issues. This is done a lot to help my inner thigh chafing as well.

I have been using a mix of the full undergarments with the pads built in and pads that I put in my normal briefs. Each have pluses and minuses. Overall I think the full undergarments are more comfortable and easier to deal with at home. I think this is because my briefs have a tight fit which I usually like, but adding a pad in there isn't as comfortable. However, when I'm out of the house the pads are nice because I can carry a spare in my back pocket instead of carrying a bag with me. So I still use both most days.

The worst time during the week is evenings after work when I'm doing things like preparing dinner, basic housework, etc. I can have a great day and not have to change out any pads at all and then end up changing once or even twice in the evening as my activity level increases. So I feel like I'm making great progress and then I start leaking a lot. That can be frustrating.

While my control is definitely better, the nerve signals telling me how much urine I have or when I'm really done is still a work in progress. I still can't be certain about these things. The key at this time is a combination of relaxing the muscles, pushing, relax and repeat until nothing comes out. It's not a perfect system, but it's what I have at the moment. The nerves will take longer than the muscles.

I am at a point where diaper rashes don't really happen anymore which is great. I do deal with inner thigh chafing which I mostly treat with baby powder. I also find at least one time per day when I can just let my groin area air dry. And, as I stated earlier, being able to not wear a pad overnight has helped as well.

I have made a couple of work trips as well as social events and they have gone well. The trick is that if I've been sitting for almost any amount of time, the moment I stand up, I need to head to a bathroom. This means when I'm away from home, I need to plan a bit and be aware of where the bathrooms are located. And it has made me change how I am at events. For example, standing up a a concert isn't the best idea. The same for sporting events. If I am going to stand, I need to be able to go relatively quickly. When I run shopping errands, I plan bathroom breaks at most stops.

I am doing a lot of pelvic exercises (kegels). At my first follow-up with my urologist (3 weeks after surgery), she wanted me to do 30 minutes per day. I have since doubled that to 2-30 minute sessions per day. I alternate in 5 minute intervals from holding for 10 seconds/relax for 10 seconds and holding for 20 seconds/relax for 10 seconds. If things don't improve, it won't be due to lack of effort. I have another followup (3 months post surgery) in a few weeks and we'll review my progress on that front and see if I need to do more or other things to get this better. The positive thing is that everyone I've talked to who has been through this reassures me that it really does get better. And when I look at things objectively, that is happening. If you recall from my last post I was using 4-7 pads a day. A typical day for me now is 3 pads. So from that standpoint, I can see progress. But I'm still looking forward to the day when I don't spend much of the day thinking about and dealing with urine.

When I get frustrated, I remind myself that I'm about 10 weeks from the catheter being removed. Taking 6 months to a year to really get better is normal. In that light, it's not as bad. If you're going through this, know that it does get better.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

In this post I will attempt to walk a line. I don't like being negative about things in general as I don't think that complaining about something makes it better. However, this blog must give an honest account of my journey if it is to be of any use. With that said, this has been the most frustrating part of this journey so far. It's time to talk about the aftermath of the surgery and beginning the road to recovery. So I'll start with lots of talk about...urinary incontinence. Sounds fun, right?

As I stated in the last post, I had my first experience with urinary incontinence shortly after my catheter was removed. Thankfully I brought “undergarments” to help deal with it to that and they have become a large part of my life afterwards. There are two main reasons for this. The main one is that the prostate is actually involved in the control of urine flow. Men have 2 different valves that can control urine. Prostate surgery removes one entirely and the remaining one usually isn't used as much so it will take time to build it up. The other is nerve damage. While modern surgeries such as mine minimize nerve damage, some can still occur. This means the brain will need to re-learn how to recognize the signals.

This matches my experience. Post surgery I really can't tell how much urine I have or when I'm actually finished. These are sensations I simply took for granted for over 50 years...and they are just gone. I can feel some pressure, but it doesn't feel quite the same. And other times, I feel no pressure at all, but I just start releasing. It's been about 4 weeks since the surgery and 3 weeks since the catheter was removed and here's what I've learned so far.

Physical activity and body position make a big difference. I have the most control issues when I'm standing and actively moving. If I'm sitting or lying down, I have little to no problems. However, I have learned that if I have been sitting for a while that the first thing I should do when I get up is go to a toilet. I still forget sometimes, but the more I do this, the less accidental leaking will occur. It doesn't matter if I feel like I need to urinate or not, it will likely happen anyway so I can't really trust my instincts on this at this time. Interesting enough this has made my overnight/sleeping experience different, however the easiest to handle. Different because I get up every 1-4 hours (usually 1-2) throughout the night and make a bathroom trip. Fortunately, most of the time I have been able to get back to sleep so by morning I'm reasonably rested. However, by morning my briefs are not significantly wet. But once I start doing things, that changes ... a lot. This has caused me to adapt my morning routine. I get up, shower, shave, etc. then put the briefs I wore overnight back on as they are still quite dry. Then I go downstairs to do my usual morning tasks (attend to cats, check the pool, get ready to settle in to work). After these activities, I've usually leaked quite a bit and then I do my first change of the day. On an average work day I'm at home working on a laptop so getting up every hour or two is normal and I try to remember to go to the bathroom right away. Then by evening my activity level picks up and I start leaking regularly and I'll need to change briefs several times in a much shorter time window. Then I'll do one last change before bed. And the cycle continues.

As of today, a good day for me is 4-5 briefs. A bad one is 6-7. Of course those terms are in terms of urinary control. The “bad” days could be good otherwise because I'm actually doing things. I'm not one who usually sits around all day so it's a bit of a trade off. Be more active while wetting myself more or lay around and stay drier.

I have also been getting out and doing more normal life things. I went out to dinner with friends last week. This week I did my first in-person customer visit since the surgery. Both of these involved a brief change. I have a cloth tote bag that I take with me that has supplies such as extra briefs, a small plastic bag in case there is no place to properly dispose of soiled briefs, as well as diaper rash creme and wet wipes. So far that is working. I may have to adjust things as I learn more. But I want to show that it is possible to do normal life things even a few weeks from surgery. It's not exactly the same at this point. But it is possible. I have been able to do my weekly shopping and errands and just this past week was able to mow the lawn. I won't say everything is normal, but being able to do normal things is very good.

One of the goals of this blog is giving tips to men going through this. One tip about the underwear (adult diapers). The size charts are based on waist size. This put me right on the upper end of a small-medium. So I started with those and, initially, I thought they fit well. I learned after about a week that although they fit well at the waist (which is elastic), they were cutting into my upper thighs too much and further irritating an area already irritated from leaking urine and sweat. So I tried the next size up (large) and found that those fit better. So the tip here is don't be afraid to try out a couple of sizes before you start buying in bulk (which you will likely need to do).

Another tip is something I've mentioned earlier here and in the previous post...diaper rash. I can only speak for me but I would imagine that some amount of it is going to be inevitable. The good news is that there are really good products out there as I suggested in the last post. Get a few tubes of it and keep them in any bathrooms you typically use at home as well as have one for travel. This situation is uncomfortable enough so do what you can to help lessen the discomfort. At this point, I'm usually applying a creme 2-3 times a day so it's not a bad idea to stock up at least early on post-surgery.

Another diaper rash tip. Find some time during the day when you can sit without any pants or undergarments on at all and just let your groin air dry. It's not the worst idea to have a towel underneath you and some kind of tissue or toilet paper handy to handle any leaks that may occur, but I have found that at doing this at least once a day really helps keep the rash under control. Thankfully, it's just me and my wife at home so it's not difficult to do. But even if that's not the case, find some time and a place where you can do it.

I will say the biggest struggle is mental. I get frustrated and discouraged on a regular basis. I rationally know it's not my fault but it's still something that normal adults just do and likely take for granted. I know I did. And now that I don't have that, it can really bother me. I just have to remind myself that this is temporary. I've seen various statistic with a range of only 2%-8% of men have long term problems. This should get better in a few months. I'm grateful for those around me, especially my wife, who have been supportive. My wife in particular as she has seen the frustration first hand that I typically don't share with others. I am doing kegel exercises every day since the catheter was removed to try and rework those muscles and, hopefully, regain control. But this will take time...and that is both encouraging and frustrating. I look forward to the day when I don't spend much of my waking hours concerned about urine.

There is more to cover with respect to recovery, but I'll tackle those in another post. But I thought it was important to cover this topic in its own post as it is the biggest challenge near-term after surgery.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

So I'm home now with the catheter. I get myself settled on the second floor of my house where I have my recliner and that's where I'll spend much of the upcoming week. I have 2 types of catheters: A traditional one with a large bag and a much smaller one where the bag can attach to my thigh which is meant to make walking easier. I spend most of my time with the large bag and find ways to make it work even when I'm out of the recliner, but the leg option is still very useful. The key with any catheter is to keep the bag lower than your penis so that gravity works in your favor and urine doesn't flow backwards. We received very good instructions on care and how to change out the bag and how to change switch bags. Thankfully my wife was able to do all of that for me but I could have done it if needed.

While I technically worked that week, to be honest, I was at about 40% of my normal work week. I got on several remote meetings, spoke with colleagues electronically and over the phone as needed. The other key was to stand up and walk regularly. Just like in the hospital, it's not good to lie around all day. I did notice that my feet did swell up a bit but they felt better when I got up and walked so that was extra encouragement to get up and move. I also had the incentive spirometer that I had in the hospital which I continued to use regularly all week. This is avoid further complications like pneumonia.

Some tips that you may not have considered. Underwear is fine with the catheter. But I strongly suggest snug fitting briefs over something like boxer shorts. The reason is that they really help keep your parts from moving around which reduces the irritation from the tube. This made walking around at home much better than walking in the hospital. Additionally, I found that while being careful to dry my groin area, it wasn't always getting fully dry and I developed a diaper rash much like babies get. So I also suggest getting some creams to help with that before you need them. They are not very expensive so if you aren't sure, try a couple different ones and see what you like best. They will also be useful later after the catheter comes out which I will explain later.

I quickly developed a routine for the week. My plan was to sleep in the recliner that week to avoid rolling around and disturbing the catheter tube which can really hurt. I start the day with emptying the overnight catheter bag and switching to the leg bag. I would then go upstairs to our bathroom and shower, shave etc. It was much easier to shower with the leg bag. I can't express how much better I felt after doing this. It's strange enough walking around with the catheter, but getting a shower and shave just helped me feel a little more normal. They key to showering is to not touch the incisions across my belly but rather just let water rinse over them and gently pat them dry. After all that is done, I would switch back to the regular bag and start my day. I made an effort to get up and at least stand if not walk at least every 2 hours during the day. The key to this is to walk slowly. Even stairs were possible if I took them slowly. As I felt more comfortable getting around, I would go downstairs to the kitchen and get something to eat/drink. Of course, my wife was more than willing to do these things and she certainly helped, but I wanted to be active and figure out how to do as much as I could. Once in the kitchen I found that I could hang my bag on the cabinet knobs below me and then have both hands free. I did the same thing at the bathroom sink. If your rooms have lower cabinets, definitely take advantage of this. Before surgery I had made a few bigger meals so that I would be able to simply reheat portions post-surgery which made things easier. But we did order in a couple times as well. There's nothing wrong with spoiling yourself a bit given everything going on. I found that I had no real dietary restrictions and could eat everything that I ate before.

Of course, I worked out a medication schedule since I had the seven different meds many of which had different schedules. It wasn't too difficult. Twice a day I needed to clean around the tube at the entry point. For this they sent home some cleansing wipes and the antibiotic ointment. This was delicate work but not too bad. From a pain point of view, I mostly took 975mg of Tylenol 3 times a day and 50mg Tramadol up to every 6 hours. I was supposed to stop the Tramadol after 3 days but I found I was done with it after 2 days. I kept up the Tylenol all week.

Then usually after dinner, my wife would empty my catheter bag and then I'd try to get as much sleep as I could which, honestly, wasn't that much. I was averaging about 4-5 hours a night. Overall it wasn't too bad, but I was looking forward to Thursday when I had my nurse appointment to (hopefully) get rid of the catheter.

My appointment was early (8 am) which I learned was very intentional. The idea is that once the catheter is out, they want you to urinate at home within 6 hours. If, for some reason, that doesn't happen it gave me time to return to the office before they closed to have it re-inserted. Not something I wanted at all, but I understand the reasoning behind this. The nurse assured me that 99% of the time no return trip is needed, but they would rather do it there than have me to go the emergency room. After my shower that morning, I kept the leg catheter on instead of switching to the bag which made the trip to the urologist office much easier.

I had heard a few rough stories about catheter removals from friends of mine so I wasn't exactly looking forward to the actual procedure. However, mine wasn't bad at all. I was laying back on those doctor office beds and the nurse pumped about 200mL of sterile water into my bladder and she had me tell her when I felt full, which was right about that level. Then she did the actual removal. She asked me to take a deep breath and exhale on the count of three. On three, she pulled out the tube...and that was really all it was. No real pain, it was just done. This was a relief. She then gave me a plastic urinal and told me that she would check on me in a bit but that the goal was for me to void all of the liquid she gave me. This could take some time, and I was free to sit, stand or do whatever I thought would help. She then left. At first nothing really happened. So I eventually stood up holding the container and just waited. My wife was with me and within a minute or two of standing up she told me it was working. Honestly I hadn't really felt it yet but I looked down and there it was. It was pink at first which makes sense as there was certainly some bleeding that in there. Then I was able to feel it and even push it which was encouraging. Maybe 10 minutes later the nurse returned and said I was done. I had voided around 250mL of liquid so I passed the test and could get dressed.

Doing so, I had my first experience with urinary incontinence which I was warned about after the catheter came out. It hadn't been out 20 minutes and I was already leaking. I had the forethought to bring an “adult diaper” with me and put that on instead of my regular underwear which I was able to wear all week.

Once home, I was instructed to drink extra water to help get my urinary tract moving. This is normal for me as I usually drink a lot of water during the day but I do suggest doing this. Thankfully, everything started flowing within a couple hours of being home and there was no return visit required.

And that was my week at home with the catheter. Some doctors may want to keep it in longer (2-3 weeks), but mine was comfortable with one week as long as I everything worked well afterwards. This was my first experience with a catheter and, while I wouldn't say it was great, it was better than I expected. You should be able to get up and do some basic tasks..just do it slowly. I would spend 2-3 seconds per step when going up or down a flight of stairs. If you don't want to do a full walk every time, at least stand up and stretch. I found doing that made my abdominal muscles feel better and it helped a lot with the swelling in my feet.

So this phase is done..but the next one starts immediately with a different set of challenges....


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

My surgery was a little over a week ago and I'm up to writing about it. I was the first surgery of the day for my urologist so I had to get there very early (5 am, we literally waited outside the hospital doors until they opened). While I'm not a morning person and probably got a couple hours sleep the night before, the good news is that there were no delays for me since there was no time for things to get backed up. Before going in, I drank the energy/carb drink they gave me which was, surprisingly, not bad. I went in on a Friday morning which was also convenient because, since I primarily work from home, I only had to take 1 day off of work. Obviously other people's situations may vary based on the physical location and the amount of physicality of one's job. If you work a desk job but need to go into the office, you will probably need 1-2 weeks out for reasons I'll get into later. If you work involves physical labor, it could be longer.

I will probably say this multiple times but I cannot commend the staff at the hospital were I had my surgery enough. From beginning to end, everyone was fantastic and did everything they could to help me through this. I sincerely hope any other men out there reading this have the same experience because it really makes a difference. I start with usual hospital check-in things, showing ID, insurance information, etc. Then they gave me the ID wrist strap with the QR code that would be scanned a crazy number of times during my stay as well as a “Fall Risk” wrist strap because I was going to get anesthesia. Not 15 minutes later I was called back to pre-op work. This is where they get basic vitals, get you into those lovely hospital robes, and then all sorts of folks come through to ask you all sorts of health questions. Again, very standard stuff, similar to when I was there for my biopsy several months ago. I meet with the various team members (anesthesiology, nurses, and of course, my urologist) all of whom explain their role and what will happen. One of the things I was told is that I would have a tube down my throat to help me breath during surgery but that it would be out before I woke up. I was quite glad to hear this because the idea of waking up with that sounded quite frightening. Finally, I get wheeled into the operating room where I move over to a very hard, cold, and not particularly comfortable table. But this is fine as I'm not going to be conscious for very long anyway. And the next thing I know ....

I wake up in recovery which looks very much like the pre-op area. A nurse is there to get me acclimated and asks how I'm doing, pain etc. I do have a large amount of abdominal pain. When she asks me to rate it on a 1-10 scale, I guessed and said 6. Later I decided that was too low, it was probably an 8, but I didn't have much of a basis of comparison yet. She adds some Dilaudid (aka hydromorphone) to my IV which is an opioid but really did help with the pain which was strong enough that I was doing breathing exercises to get through it before the medication took effect. The other thing I realized was that it was very cold in that room. Every time I would exhale on the breathing exercises, my feet would shake. I didn't realize that was the cold until they took me to my room.

Once I reach my room, I had to stand up to move over to the hospital bed. This was really the only time I was truly a fall risk as my balance was horrible. But I had multiple people there to help me and I settled in well. At this point, my wife as able to join me in the room as well (she was with me right up until they wheeled me into surgery which was great). It's at this time that I would first notice my urinary catheter which was new for me but something with which I would need to become familiar for a while. More on that later. I also notice the time, it was about 12:30 so my surgery was about 3-4 hours which what I was told to expect. I was then introduced to the first nursing team of my stay (the day shift). There was a male nurse who was training a newer female nurse as well as an assistant. I didn't see the male nurse again until the shift change, but the nurse in training was very good and everyone has to learn sometime. But the male nurse described and wrote down on the whiteboard the three main objectives of my stay there:

  • Pain Management, which is necessary for healing.
  • Urinary Output. Initially there was a lot of blood in my urine which made sense given where they were working, but they would monitor the volume and color of my urine.
  • Bowel Functionality. A bowel movement would be ideal but, at a minimum, they wanted to know that I was passing gas. It is normal when getting abdominal surgery for the bowels to, essentially, shut down for a while. They wanted to see some sign that the system was starting to work.

I had 2 IVs, one in each hand, but only my left hand was active with the right being there as a backup. Both were well secured and I didn't have much restriction of movement. These were mostly basic fluids as the medication I got while there was oral. The other thing of note is that I had a Leg Compression Device on each leg. Think of these as wraps around your lower leg that inflate and deflate almost like a blood pressure cuff (but not as tight). The goal of these is to prevent blood clots from lying in bed for a long time. They didn't bother me much, but I think it's worth mentioning.

Soon I get a visit from “Dietary” which was someone who wanted to get a lunch order. They had a small but decent menu and I was not on any dietary restrictions so I could pick anything I wanted. I know the stereotype is that hospital food is horrible but, honestly, it wasn't bad. A bit bland for my taste but overall the menu had something for just about anyone and, overall, it tasted good. Not 10 minutes later the food arrives. To be entirely honest, I was never particularly hungry during my entire stay so I didn't eat a lot, but I thought it was a good idea to get something in my system to start the healing process.

Then the normal process started. About every hour someone was coming in to do something with me. Sometimes it was just checking vitals, other times it involved giving me medications, checking my urine, and just generally checking in on me. This is why no one gets good rest in hospitals, but I understand why they need to do what they do and everyone was very nice and careful. A couple times a day, they would check my incisions. I had 6 of them, each about 2 inches (about 5 cm) long across my lower abdomen, which was noticeable swollen (and would remain that way for quite a while). There were no traditional stitches, rather they were held closed by surgical glue. I was told that over time the glue would simply flake off so there was no need to have any follow-up outside of checking for things like infections. The other thing that would happen a couple times a day is that my catheter site would have to be cleaned. Let me say that if you have modesty issues, this will likely get you over them. The process is that the nurse would clean around the tube in my penis with some towels in a disinfecting solution and would finish by putting some antibiotic gel around the site. Now what makes this a little bit worse is that if the tube shits a bit, it sends you a small shock of pain. Nothing horrible, but enough to make you flinch for a second. Unfortunately, this won't be the only time this happens.

As far as medications go, it was difficult to keep up with everything they were giving me but they did explain each one and what it was for. That and by using the medication list with which I was sent home I think I can recreate it here for those interested:

  • Acetaminophen (Tylenol) for pain
  • Nitrofurantoin (Macrobid): an antibiotic specifically for urinary tract infections
  • Oxybutynin (Ditropan): to avoid bladder spams, which I don't think I had but I'm told can be quite painful.
  • Sennsodies-docusate (Senokot-S): A stool softener. The idea here is that you want to have bowel movements, but straining to get them would be very painful due to the surgery.
  • Tramadol (Ultram): A low-level opioid for pain not handled by the Acetaminophen

If there were other things, I may have forgotten them, but these are what I remember and have found on discharge papers. On most nurse visits, I would be asked to rate my pain on the 1-10 scale. The idea behind pain management is to try to catch it before it gets really bad because if you let it go too long before treating it, the pain medications may not work and you have to go to something stronger which they (and I) would like to avoid. So my line was around a 5-6 I would alert them and they would give me something based on the schedule of what else I've taken. I've always been a minimalist when it comes to medications so I wanted to keep the pain under control to avoid going to heavier drugs.

There was one thing that I thought was being missed. I was told by my urologist that I would be up and walking the same day I had the surgery. It was nearing the end of the day shift and I hadn't done that yet. I asked the nurse if this is something I should be doing and she agreed and set up a time shortly after to get me up and get me walking around. I say this because I think it's important for patients to understand what should happen and to speak up and ask questions if you think it's not happening. She actually seemed a bit surprised that I would ask for this, but was enthusiastic to get it going. My guess is that not a lot of patients want to do this. But, to me, my job there is to heal and improve so I want to take an active part in that just as everyone around me is doing so as well.

The first walk was, let's just say, difficult. The nurse's worry is, of course, that I might fall (and remember, she's still in training) but, by this point, my head was clear and my balance was fine, even though she insisted I use a walker. What made walking difficult was the catheter. Keeping the whole contraption with me wasn't that bad. In fact, for this first walk the nurse carried the bag for me. The problem was that all I was wearing was a hospital gown. There was nothing to stop my penis from moving as I was walking. This caused a lot of irritation from the tube as it would move. So with each step it hurt. After a few steps, I'd have to stop and make sure I went very slowly to try an minimize the movement. I will say the first walk was the worst..it actually got better later. However, because of this I only made it about 1/3 of the way around the floor before I went back to my room. But I took it as a small victory. I then sat up in a chair instead of going back to the bed. This is also preferred as sitting up helps prevent pneumonia. At this point, I get to order dinner and eat in the chair. Then before the night shift comes on, I moved back to the bed for a while.

Before day shift ended, my urologist who did the surgery came to see me and said that everything went very well and that the inside of my pelvis was “textbook” and made her job easier. That's kind of a strange compliment, but I'll take it.

At this point, there was a shift change and I was introduced to the overnight shift. As I've stated before, everyone was great and I noticed no change in my level of care. However, the process is very much the same with someone coming in about every hour to do something to me. By this point, my wife had gone home to take care of our pets and get some rest. I came prepared to entertain myself in the case I had trouble sleeping. I had my iPad with me where I could watch videos, read, and listen to music. Along with the iPad I had some noise cancelling Blu Tooth earbuds as well. My thought here was to be able to block out the floor noise even if I wasn't listening to anything. But, to my surprise, the floor was very quiet that night and I didn't have an issue. Still, I suggest bringing something like that in your case. The nurse on this shift was impressed with how my urine had cleared up. It had gone from quite red, to pink, to a clear light yellow by this point in time. I was producing quite a bit due to the fluids they were pumping into me through my IV in addition to the amount of ice water I was drinking. I typically drink a lot of water during the day anyway, but in the hospital I really kept it up. First, because the air is quite dry and, second, because it helped to keep my throat wet as it felt slightly scratchy likely due to the tube they had down my throat during surgery. I do think that it also helped clear up my urine quickly so I strongly suggest making sure they keep water (cold or room temperature depending on your preference) near you all the time and that you drink as much as you can.

I had two things that I didn't expect to happen during the night shift. First, it felt like I had pulled a muscle around the right side of my rib cage. Moving really hurt. I asked the nurse about this and she said it wasn't that but that it's very common when they do arthroscopic surgeries since they pump air into the area to give them more room to work. That air eventually has to work its way out. I had actually read about that before the surgery, but it had slipped my mind. The other thing was that I felt like I really had to urinate which seemed odd since I had a catheter. She checked my bag and urine was flowing fine and that it was likely just inflammation. She gave me a dose of Tramadol which helped both of the symptoms. I bring this up because as much as you research before having a surgery, you can still get something unexpected and the best thing you can do is ask. Be your own advocate. Sometimes just knowing what it is can help along with addressing the problem, of course.

I, again, request to get up and walk once during the night shift. Hey, if i can't sleep I can at least do something to help myself. Again, the nurse was enthusiastic and set up a time to do so. This time it wasn't great but a little easier. My guess is that the inside of my urinary tract had gotten a little tougher since my last walk. It was still quite unpleasant and I had visions of living entirely on the first floor of my house until it was out. But this time I made it ½ way around the floor before getting back into bed. A small but important improvement.

The rest of the night was getting 20-45 minutes of sleep at a time in between check-ins with the nursing staff. This went on until about 7 am or so when the lab tech came in to get blood draws for the day. A little later my wife returned as the plan was to send me home sometime that morning. I was introduced to the new day shift of nurses, and had some breakfast. As I was going home with the catheter, we got instructions on how to change out the bag without making as mess as well as a way to change to a smaller bag which attached to my leg which could make walking easier. As I mentioned before my wife spent 15 years as a Registered Nurse but has been away from the field for over 10 years. Still, having her there as they explained things to me and, more importantly, having her at home with me was invaluable. They can throw a lot of instructions at you when they send you home and she is able to ask more medically intelligent questions than my engineer brain ever could. And, although it's been an while, she's actually done this stuff before. This was all new to me.

While we wait on the long process of discharge, I ask to take one more walk this time with my wife here (she was gone for the first two). Again, they were glad to accommodate me. I bring this one up because it was actually a critical juncture for my mental state. This walk was much easier. Not pleasant to be sure, but much less painful and I wasn't using a walker and was carrying my catheter bag. It was this walk that made me think that going home with this was going to be possible and it really helped change my outlook on the upcoming week. I made it about 2/3 around the floor. I could have done more but I would get plenty of time to get up later that day and just knowing that I could do it without being in agony really lifted my spirits. I say this to encourage other men who go through this. Make sure you get up and walk early and get the bad walks out of the way. Get used to how to do it and let you body get used to it while you have the most help. It will never be great, but it can get better. At this point, I even felt better about taking stairs at home.

While my urologist wasn't there in the morning, I did get a visit from another urologist on staff along with a resident who checked everything one more time and gave me an opportunity to ask any further questions.

Finally, discharge time arrives. I am sent home with 7 prescriptions. All of the ones listed above plus a laxative and the antibiotic ointment that the nurses used to clean my penis around the tube as I'll need to take over that job at home. They wheel me out and my wife gets me home where the next phase of recovery begins.

Sorry if this post is too long and had too much detail but my goal here is give men some idea of what to expect if having prostate surgery. It's a big deal and not knowing can really cause one to worry. Obviously, everyone's experience will be different and there will be men who have more difficulties than I had. But I also wanted to show that things can go smoothly. Hopefully I have given you some idea of what will happen and can help others prepare for this part of their journey. That's the overall goal of this entire site but I think that it was very important for this post in particular. If you made it this far, thank you for your indulgence.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

I know it's been a while since I've posted but there hasn't been much to say on this front for a bit. However, as I get closer to the surgery, I have a few things I can share.

First, I started the Cialis last week. My surgeon wants this to ensure maximum blood flow before the surgery so I started it 2 weeks before the scheduled surgery. No bad side effects but, I can say, I've noticed that they do work. I've never taken these sorts of pills before, but I have noticed a difference. Maybe I did have some prostate symptoms after all. But I have noticed longer erections since I started taking it. Of course, it could be a placebo effect, but I don't think so as I wasn't really expecting to notice any difference.

Today, I had some pre-surgery tests to make sure I can handle the anesthesia. Pretty standard stuff: vitals, blood, urine, and an EKG which I hadn't had before. The only interesting part about that was that it took longer to set up and tear down than to actually run the test. I had a dozen or so sensors stuck to me, then I don't think it was more than 2 minutes before they were removed. In any case, everything came back normal (like I said, before this I haven't had any real health issues). I get the battery of health questions and I give my standard line that I'm a very boring case outside of the cancer. The pharmacy tech came in to review my existing prescriptions and all I have is the Cialis for this procedure (and after). I do start a 3-day round of Bactrim (an antibiotic) before the surgery and I have standard wipes to use for pre-surgery sanitizing. I also have an energy drink that I'm supposed to take 3 hours before the surgery. It's basically carbs/electrolytes in case the surgery goes longer than expected (about 3 hours), especially since I will be on a clear liquid diet and doing bowel cleanse the day before.

Beyond that, I'm just trying to enjoy life and have a normal summer. The surgery is set for the morning of September 8 (next Friday) so now that my tests came back clean, I should be ready to go and, hopefully, take a big step towards being cured. But that's a ways away. In any case, I will post updates as I have them and feel up to it. As always, feel free to reach out if you have any questions or just want to talk about this stuff.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

Before I get the second biopsy in May, I need to get an MRI of the area to help better direct the samples for the next biopsy. This is new for me, but not a huge deal. The biggest issue I've heard of people getting an MRI is getting claustrophobic in the tube. And while I can get that way, due to the fact that I'm getting my nether regions scanned, my head never went into the machine. The results were as expected. It showed where the cancer was on the prostate. This would help guide the next biopsy and get a better idea of how much cancer I have and how aggressive it is.

A few weeks later, I do a bowel cleanse the day before the biopsy. This is similar to the preparation for a colonoscopy, which I have had before. Like the first biopsy, I'm prescribed an antibiotic starting the day before the procedure through the day after.

Unlike the traditional biopsy which was done in the urology clinic, this procedure was done at a hospital. I am sedated for the procedure and leave a couple of hours later with a bandage on my perineum and sent home the same day. While the procedure itself was easier since I was sedated, the recovery was different. One of the definite differences was as the site was healing it, along with my butt, itched for about 2 weeks. I wasn't expecting this, but from Internet searches, it's normal and the usual treatment is petroleum jelly (like Vaseline) on the affected areas. That helped, but it was still really annoying. The rest of the healing process was similar with blood in the urine and semen, the latter lasted for about a month.

Also, like the last time, I got the biopsy results several days before my appointment to review them. Again, it was 13 samples. This time, though the results were quite different:

So, that's not good but I'm not sure how bad it is. On the one hand, there are definitely more samples that are cancerous or pre-cancerous, however it's reasonable to expect that since this biopsy was concentrated on a known area. I see this going one of two ways: either we continue active surveillance or surgery. For some reason, I'm thinking it's going to be active surveillance but I realize it might not be that. Internet searches are good for giving you basic information, but what I lacked was the real-world application of the information. But that's why I have this appointment.

Appointment day comes and my doctor comes in and the first thing she does is make sure that I have her business card in case I need to contact her. Ok, I'm a bit suspicious. Next she asks if I've ever had abdominal surgery before. I haven't, of course, but I now see where this is going. She wants to cut out my prostate. My heart sank a bit. I knew this was a possibility, but I had convinced myself that it was the less likely of the outcomes. She explains that if I do have the option of radiation and that she can set up an appointment for me to speak with those folks if that's what I want, but that I'm just over the line of taking action vs surveillance and she believes that surgery is the best option at this point. It's not urgent, but she suggests getting it done in the next few months. She tells me that if we do this there is a high probability that I will be cured, although we'll still have to do some follow-ups to be sure. She cited a study showing that 70% of patients who get the surgery are still cancer free 10 years later.

Now the flip side: surgery is not without its own consequences. There is a reason we started with active surveillance. Because of swelling, I will have a urinary catheter for about a week. As a result, after that is removed, I will have little bladder control until it heals up from being forced open for a week so I will initially wear adult diapers, eventually going to pads before, usually, going to nothing. Much like women who have had babies, it could be common to pee a little with a big laugh or something similar. Regular Kegal excercises are suggested to help strengthen the muscles to better control urination. I have a new appreciation for the ladies and what they have to do. Then there is the sexual side. It is very common to have erectile dysfunction for the first 18-24 months after surgery, perhaps longer. She has a “penile rehabilitation” program involving drugs (cialis), devices to try to increase blood flow and, if needed, injections that can cause erections as needed. As a married man who is only 52 years old, this matters to me quite a bit. One thing in my corner is that my urologist had a fellowship in robotic assisted surgeries for the purpose of minimizing nerve damage. So, to a laymen like myself, it sounds like she knows how to do this as well as anyone. She wants me to start the cialis two weeks before the surgery to try to get the blood flowing as well as possible at the time of surgery. Of course, a vasectomy is typically done as well since post surgery, I can't generate semen as that's the primary job of the prostate. In my case, I had one years ago, but I wanted to include this for completeness. I will likely spend one night in the hospital then be sent home with several post-surgery follow-ups (I have 4 of them currently scheduled, between September and December of 2023). After a very good explanation, she answered all my questions and told me that her scheduler would call to set up a date. I left with a 20+ page paper on the procedure and the recovery process. It doesn't look fun, but doable.

About a week later, I get the call from the scheduler. We settle on September 8. I have some trips I'd like to take this summer and that's well within the time frame she gave me. This way I'll have the surgery on a Friday and, as I usually work from home, I should be able to start working again on Monday. My job does involve a good amount of travel, but I informed my manager and team that I'd need to be home for the week after the surgery (at least until I can get catheter out).

For someone who hasn't had much in the way of health issues, this is a lot of absorb and process. It was around this time that I came up with the idea of this blog. It's a way for me to process things and, hopefully in doing so, I can help other men going through this as well.

One more point, and this is specific to the US medical system. As I mentioned earlier, I will be on cialis for erectile dysfunction daily for quite a while. Most medical insurance in the US do not cover this drug (including mine) so it can be potentially expensive. However, there is a service called GoodRx that can help find it at an affordable rate. By shopping around on that site I was able to get a 90-day supply for about $15. But it's worth shopping around because the prices can vary a lot, some as high as several hundred dollars for the same prescription. I had to drive about 30 minutes to this particular pharmacy, but the savings was well worth it. So for other men going through this in the US, take the time to find a good price.

NB: At this point, my blogging has caught up to the current point in my journey. This means that new entries will be as they happen so they may be a bit more irregular. But as new developments happen, I will update them here. In the mean time, feel free to reach out with any questions or comments as this is one of the reasons why I'm doing this.


Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.