A year ago I learned I had prostate cancer, and now I'm free of it. Here's what the experience was like, in detail (as one of my friends put it, "a little too much information"). I write this in the hope it might be helpful and reassuring to others facing the same thing. Techies will enjoy the high geek-appeal of the robotic-assisted surgery.
As you get older and your health declines, you find yourself hitting markers you’ve always associated with the very old or the very sick. After being diagnosed with Type 2 diabetes, I remember the jarring effect of having to use a pillbox to remember to take daily medications for diabetes and high blood pressure. Another dreaded milestone is when you hear the word cancer for the first time..
Thanks to having diabetes, I’ve been regularly having blood lab work done several times a year. Usually this was a routine matter: my doctor and I had arrived at the right combination of drugs years ago and I was very stable: I didn't even have to prick my finger any more to check my glucose level. In 2019, however, my PSA results were strangely high. My primary physician refers me to several specialists including a urologist.
My urologist, Doctor V, examines me. It's uncomfortable exposing my privates to doctors and nurses but I will soon get used to it! He strongly suggests a biopsy of the prostate and explains what that will tell us. I like Doctor V a great deal: he is direct, instructive, respectful, and confident. We schedule the biopsy. He asks me if I want to pay an extra $75 for anesthesia, which is not covered automatically by health insurance. Of course I do!
Biopsy
The biopsy doesn't sound pleasant: it will involve insertion of a camera and tools up my rectum so 12 “cores” of tissue from my prostate can be removed for analysis. To prepare for the biopsy, I'm told to use Fleet enemas to clean out my rectum the night before. This is nothing more than squirting a bottle or two of saline up your butt, which is as awkward and undignified as it sounds. It’s hard to do, and I don’t know if I’ve done it sufficiently. After three tries, I eventually get this right and am later rewarded with a bowel movement. I also have to fast the night before.
The next morning, it’s time for the biopsy which is done at my urologist’s office. I disrobe and put on a hospital gown. I’m instructed to lie on my side. I’m given anesthesia, which I’m told is nitrous oxide (isn’t that the laughing gas dentists use?) and that I will remain awake. This alarms me! What will I be feeling as the doctor pokes at my innards? I need not have worried. The effect of the anesthesia is that my mind feels profoundly disconnected from my body. I’m conscious but I feel absolutely nothing. I am told I need to hold the anesthesia tube and keep it in my mouth. I nod, and relax. Time goes by. I hear the doctor and staff muttering to each other as they work but I feel nothing. At one point the nurse monitoring me asks “are you still breathing?” and I realize the anesthesia tube was slipping out of my mouth. I fix it. The procedure is over, my wife comes in, and the doctor said I did fine. Less than an hour has passed from start to finish, even though it seemed much longer.
In the weeks that follow I’m told I will have bloody fluids and stool for up to 6 weeks, which is the case.
Diagnosis
It’s a long 6 weeks from the biopsy to my follow-up appointment. When Doctor V comes in to talk to me, he pulls up my lab results and tells me 4 of the 12 cores they removed show prostate cancer. “Now that you’ve heard the word cancer,” he says, “don’t think to yourself ‘I’m going to die’.” He’s wise to say this, because that’s right where your mind goes. We all know people who get cancer, and many of them die from it, sooner or later. My mother had breast cancer then bone cancer, killing her at 54 after a 9-year fight. My late father had surgery for prostate cancer years ago, but he never talked about it.
We discuss the severity of the disease. Prostate cancer cells are rated with Gleason scores. A score of 7 is a strong recommendation for treatment, but I’m just below that with Gleason 6, called Stage 3 prostate cancer. That sounds bad, but Doctor V says there is no Stage 1 or Stage 2.
Doctor V tells me I can pursue surgery or radiation, but studies over the last 20 years show 75% of men with my scores who opted to monitor rather than jumping into treatment never needed treatment at all. That’s good news! I’ll take any excuse not to have treatment so of course I choose to monitor. However, Doctor V says, he wants to do an MRI in a few months just to be on the safe side. This concerns me, because the only prior time I had an MRI (for a shoulder injury) it was very confining and made me hugely claustrophobic. Doctor V is happy to prescribe a sedative to help me relax during the MRI.
MRI
It’s time for the MRI. I’ve followed my instructions to fast the night before and do another rectum cleaning with a saline enema. I take the sedative I was prescribed, but I need not have worried about the MRI being confining: it wasn’t. The technician has me change into a gown, lie down, and explains what is going to happen. The machine slides me in and out of it a few times, during which time I'm not supposed to breathe. It was an easy and painless process that took only 15 minutes.
More waiting. Finally, it’s time for the scheduled follow-up visit to the urologist to review the MRI results. Given the prior biopsy discussion, I’m expecting all will be well and we’ll continue with our plan to just monitor.
Unfortunately, the MRI shows a dark region in the prostate that worries Doctor V. We’ll have do another biopsy, he tells me, this time a more extensive one that will remove 40 cores of tissue. Apparently the earlier biopsy was a simpler procedure that only retrieved tissue from one side of the prostate.
Second Biopsy and Treatment Decision
The time for my second biopsy comes, this time in a surgical office. Once again I’m put in a gown. This time, I’m given anesthesia that fully puts me out. The next thing I know, I’m waking up and the process is finished. It wasn’t painful. Like the first biopsy, I’m told to expect blood in my fluids and stool for several weeks.
A couple of weeks later we review the findings. Now that more tissue has been analyzed, the Gleason scores are higher. “You need treatment,” Doctor V tells me. He explains the treatment options are surgery to remove the prostate or radiation. Doctor V is a surgeon, and explains that the surgical option is more precise but also final in that the prostate is removed. Radiation is less precise and can bring consequences to other organs in the body such as the bladder; however, it can lead to remission of cancer and the prostate is still there. He gives me some books and urges me to also seek out the counsel of a radiologist before making a decision.
It doesn’t take long to decide on surgery. Our pastor, who has also undergone prostate surgery, recommends robotic Da Vinci surgery. I investigate the robotic surgery, and it has high geek-appeal. The robotic approach is minimally invasive with 5 small incisions instead of a large one. Here how the Johns Hopkins Medical website describes it:
"Using the advanced surgical system, miniaturized robotic instruments are passed through several small keyhole incisions in the patient’s abdomen to allow the surgeon to remove the prostate and nearby tissues with great precision. This is much less invasive than a conventional radical retropubic prostatectomy, which involves an abdominal incision that extends from the belly button to the pubic bone."
I ask Doctor V about Da Vinci and he confirms that’s exactly what he does, robotic-assisted surgery. He's done 800 of these surgeries, and his success rate is over 80%.
I ask my wife not to tell anyone (else) that I have cancer. It’s personal, and I’d like to be the one to share it with family, friends, and work when the time is right. I don’t want my identity to become “the guy with cancer.” I figure the right time to share will be when it affects me or I have to take time off for treatment.
We can’t schedule the surgery right away because COVID-19 has suddenly shut down the world. Months go by. Finally, we’re able to schedule the surgery. It’s been 6 months since we decided to do it. I schedule a week off work. I let it be known to family and friends and work and church that I have prostate cancer and will be having surgery. People are praying.
Surgery
I’m given instructions for my surgery, a robot-assisted radical laparoscopic prostatectomy. I have to describe every medication I’m on, every prior surgery I’ve ever had, and family medical history. I’m given a special surgical soap I’ll need to shower with the night before and the morning of surgery. I’ll have to fast. People from the hospital call me, multiple times, to review my medical history, and what the procedure involves, and what the risks are, and what it will cost. I didn’t know what to expect regarding costs, but am pleasantly surprised the hospital and surgeon don’t seem to want more than a couple thousand dollars, and only need half up-front. I’m told my Aetna PPO should cover everything after that max out-of-pocket is reached.
A week before the surgery, the hospital requires me to come in for a COVID test. It’s over quickly, but I’m unprepared for the shock of the swab being inserted deep into my head and rotated 5 times. “I made a grown man cry,” says the nurse.
On Tuesday, the day of surgery, my wife drives me to the hospital. We get registered, then we wait. When they’re ready, they start prepping me for surgery. In the prep room, they weigh me, check my blood pressure, and take some blood to check my blood type. My clothes and wedding ring and personal items are put into bags and I change into a hospital gown. They give me an ID bracelet and hospital socks.
They have me lie down in the hospital bed, where they put an IV into the back of my hand. My wife is brought in to wait with me. Periodically something happens between the waiting. I have to sign a whole lot of waivers. Later, the anesthesiologist stops in and reviews what he’ll be giving me and reviews my medical history. Finally Doctor V shows up and confirms everything is ready. It’s early afternoon as I say goodbye to my wife and they start the anesthesia. I won't be awake to see the robot, but I know what to expect. As I drift off, I wonder if it’s going to hurt after the surgery.
The next thing I know I am waking up in the same place, the surgical prep room. It’s evening and the surgery has been performed. Doctor V stops in and says everything went according to plan, but it took several hours longer than usual: he had to work around existing scars I had (from an infant blood transfusion) with the incisions, and once inside he had to work around enlarged lymph nodes which complicated visibility and access to the target area.
I’m wheeled to my hospital room. I'm not in any pain. As explained to me before the surgery, I realize I’m connected to a Foley catheter now with a tube and urine collection bag. I’d expected that would feel extremely peculiar, but it does not.
The nurse hooks me up to multiple monitors whose mission in life is to beep constantly. They put strange DVT devices around my calves that rhythmically massage them, to help with circulation and avoid blood clots. They don’t hurt, but they’re weird and make noisy air hissing sounds.
I’m now feeling very much like an immobilized science experiment with the catheter, urine bag, monitors, and leg massagers. The nurse makes sure I’m okay and as comfortable as possible. I’m not allowed to eat anything, which I don’t like one bit, but I’m eventually allowed to have some water.
The nurses are great, but there are times when I’m just there by myself for long periods. I go to sleep as best I can, but the weirdness of everything I’m hooked up to and the incessantly beeping monitors make it hard to get much rest. I wake up thinking I made it through the night but its only midnight.
The next day, Wednesday, I only get to eat Jello and broth, which I really am unhappy about. I’m hungry! A nurse tells me I might get to go home that day, or maybe stay till Thursday, depending on what Doctor V thinks when he stops in later.
There’s a lot of just sitting there waiting in the hospital room. My roommate, who just had the same procedure, seems to be in a lot of pain. I have not felt any pain so far.
A therapist comes in and asks me if I feel up to trying to walk a bit. Yes! I’m eager to get out of this bed with all the contraptions. It’s surprisingly hard for me to get out of bed and sit up and I have to be helped. A little later we get me to a standing position after disconnecting most of the devices and I have to carry my urine bag in one hand and wheel my IV stand in the other. We take a slow plodding walk around the hospital floor, then back to my bed. I am okay walking, but getting up from bed and getting back into bed wasn’t something I was able to do under my own power.
A nurse asks me if I’ve had a bowel movement. I haven’t. Lunchtime comes, and again I’m limited to gelatin and broth. It's been 48 hours since I had solid food and I’m extremely hungry, but the most I can get the nurse to give me is water.
Doctor V finally stops by, and says I’m looking pretty good though he is unsure if he’ll release me today. He’d like me to have a bowel movement first. I promise I’ll get right on that. He says he’ll come by again at end of day.
I’m bored. I do some reading, I watch some TV, I listen to my roommate complain to the nurse that his shoulder is hurting. She gives him some pain medication. I have not needed any so far. It's not easy, I'm able to make it out of bed and over to the sink on my own to brush my teeth which is long overdue. That's better.
It’s early evening, 24 hours since the surgery, and Doctor V comes back. I haven’t had a bowel movement yet, but he decides since everything else is looking super that I can go home. I text my wife excitedly.
A nurse explains to me how to care for my catheter and urine bag, which I’ll be wearing for a week. She gives me an extra urine bag and shows how to empty it. She also switches me over to a leg bag. A leg bag is a smaller version of the urine bag you strap to your leg. This wonderful invention allows you to wear clothes and go out in public with nothing visible. It’s a big improvement over the earlier arrangement where your urinary system is on public display. The nurse helps me get dressed. It’s still very hard for me to sit up or lay down on my own. I’d been briefed that I needed to get Depends and pads, which I’m now wearing.
My wife shows up, and I’m given post-op instructions and discharged. I make it clear I’m ravenously hungry and I need to eat something, right now. We get some food then head home.
I reflect on my surgery and hospital visit. Doctor V is hands down the best doctor I have ever had: he’s confident, honest, explains things well, and on my side. The staff at Rancho Springs hospital gave me excellent care, except for not feeding me. I thought the surgery would hurt or that I’d feel strangely different inside ever after, but that wasn’t the case.
Recovery at Home
I’m home. Doctor V had said to avoid stairs for awhile, so we decide I’ll stay in our ground floor guest room for now rather than going upstairs to the master bedroom. I’m still wearing that catheter with the tube to a urine bag, so I’m quite the sight. My family expresses relief that I made it through the surgery safely. My boss sends a gift basket. It sure is good to be eating regular food again.
The next week is about sleeping carefully so the urine bag and tube don’t get disconnected overnight. The first morning it takes me half an hour to worm my way to a sitting position and get of bed, but each day it gets easier. I’ve taken the week off work, but I'm able to sit and get online my first day back and it's not long before I'm doing light bits of work here and there out of sheer boredom (I’m a software engineering manager, so work mostly involves thinking and typing). I get used to managing the catheter and urine bags. I’m on the large bag overnight and wear a leg bag during the day so I can move around easily, but it requires me to remember to empty it every hour.
It’s now Friday, and I’m supposed to have a bowel movement but it hasn’t happened yet. I remember I was prescribed Colace to help with that, and start taking it. Over the weekend I have a bowel movement, yay. It’s a little painful, which remains the case for a couple of weeks. I was also prescribed pain medication but I never need to take it.
Post-Catheter
A week after my surgery it’s time to visit the urologist for removal of the catheter and a post-op check-over. The catheter removal by the nurse is quick and painless. My surgical staples are removed. They give me water and test my bladder control, and it is downright shameful: I don’t have any control, none whatsoever. If I attempt to urinate, I can’t maintain a stream for even two seconds. This is depressing but I’m told bladder control will come. I’m given a paper explaining how to do Kegel exercises which will help in regaining bladder control.
As I work (from home) each day, it's going normally. Bladder control is what I’m working on. At first, it’s wearing Depends and a pad every day. Despite the initial humiliation, I have to admit it's a well-engineered undergarment. It’s not long before I can hold my urine until I feel the need to urinate, and then get 10-20 seconds of stream. It’s great to be getting some control. Nevertheless, there are still plenty of times where there’s some involuntary urination. In particular, it happens when I cough or sneeze. Over time, it gets better and I can stop wearing the pad. Involuntary urination hasn’t ended but it’s only occasional. At some point I’ll figure it’s safe to ditch the Depends.
Besides bladder control recovery there’s the matter of regaining sexual function. Nerve-sparing prostate surgery hopes to preserve sexual function, but it can take a long as 1-2 years to regain so patience is necessary.
The final paperwork from Aetna shows the full cost of the surgery and hospitalization was a whopping $121,000! I'm grateful we only had to pay about $2,500 of that.
Lifetime PSA Checks
As follow-up to the surgery, I’ll need to have PSA blood work done periodically for the rest of my life to confirm there’s no return of cancer. This is just a quick blood draw you can get at Labcorp or Quest offices and you don't have to fast the night before. Even though the entire prostate was removed there’s the chance some cancerous cells escaped beforehand. I just had my first post-surgery PSA and happily it showed all clear. Below you can see how different my PSAs before and after surgery are.
As I write this, it’s been 3 months since the surgery. I had a lot of concerns before and during this ordeal, but I am doing fine. I'm back living my life. I'm okay.
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