theGinsue
11-14-2023, 22:45
Yeah, this is a long post - but I think the information might be helpful to many here.
For a couple of years, I'd sensed a bit of change in my sense of urgency to urinate but it wasn't significant so it was easy to dismiss. Then, in the fall of 2021 I learned my brother was diagnosed with prostate cancer. He had his prostate removed in January, 2022 and there is no longer any sign of cancer in his body. During this time, I found out that my 81-year-old dad also had prostate cancer but was advised that it wouldn't be an issue for him due to his age.
In the last two years I've heard it said many times that every man, if they live long enough, will eventually have prostate cancer. Here's my story. I hope this helps anyone else who goes through this. Let's face it: Cancer, "the big C", is scary. The good news is that if you catch it in time, and if you get it treated in time, Prostate Cancer is probably the most survivable type of cancer you can get.
You must be your own advocate for your health care
At 57 years old, I'd been attempting to get my primary care provider to get me cancer screening for years. Each request went with assurances from the provider that he'd make it happen, but it never did. Sometime in the summer of 2022 I was assigned to a new primary care provider. So, in October, 2022, when I was called by my primary care providers nurse that I needed to have a blood test before I could have my medication prescriptions renewed, I insisted on getting cancer screening. After conferring with the doctor, the nurse called me back and informed me that a Prostate Specific Antigen (PSA) test was added to the annual blood tests. She also informed me the doctor had been hesitant to add this as "you didn't meet the criteria". What? I have a family history of prostate cancer, I was a 57-year-old male with a prostate, exactly WHAT criteria did I not meet? I got no answer to that question. I had concerns and medical testing was the only thing that would be able to prove or disprove any health risks. I learned that I had to be my own best advocate to get the screenings I needed.
Get screened
Until recently, the medical profession has advised men over 50 years old to get annual PSA level screening. Within the last few years many professionals in the medical field are advising men over 40 to begin this testing. My advice is to begin at 40. As with any cancer, early detection will be the key to removal without it spreading. If your health care provider or insurance won't provide this screening, find someone who will. This is your life and your health on the line, fight for it.
Know your numbers
When the results of the blood test came back, I was informed that my PSA level was 7.37. For reference, "healthy PSA levels" are 4 or lower. A 7.37 indicated potential for cancer. But, it's important to note (thank you to my dear friend Bert for reminding me of this): While PSA scores are an important indicator of potential problems, they are not an absolute and are only an indicator. If you have a PSA screen and it comes back elevated it doesn’t definitively mean you have prostate cancer. You might not have anything other than a few years under your belt. PSA's can be elevated for any number of reasons. Find a competent Urologist and follow through.
The Urology referral and biopsy
Due to the increased PSA level, I was given a referral to a urologist. The first urology appointment had a "flow-rate test" and an ultrasound to both check the size of my prostate and to identify how effectively I'd vacated my bladder. While the bladder was slightly enlarged, the ultrasound showed I'd been able to almost completely vacate my bladder - good signs. In meeting with the urologist, I was told I'd need a biopsy of my prostate to check for cancer. I was also told that the prostate is about the size of a walnut, sort of shaped like a doughnut that's slightly squished at the top and bottom across the middle, creating a left and right half.
A couple of weeks later I was back at the urologist office for the biopsy. While the procedure was uncomfortable, it was mostly due to embarrassment. The device they use to grab the samples makes a loud click as it grabs the sample but it's subdued when inside of you. The doctor obtained 12 samples; 2 each from the top, middle and bottom of each side of the prostate. The actual procedure only took about 15 minutes and then I was allowed to dress. Because tissue was taken, there was going to be some bleeding and things were a little tender for about a day.
Biopsy results
Within a week of the biopsy, I was called back to the urologist to go over the results. Of the 12 samples, all 6 samples from the left side of my prostate showed cancer; none on the right. It was then I was told my "Gleeson Score" and how the samples rated. Most of the samples rated in the "Low/Very Low" risk group, but one sample was in the Intermediate risk group. I mistakenly understood this sample was in "Grade Group 2" but later found out it was "Grade Group 3" (high end of the Intermediate risk).
95220
To learn more about the Gleeson Score, check out this website: https://www.pcf.org/about-prostate-cancer/diagnosis-staging-prostate-cancer/gleason-score-isup-grade/
Treatment options and next steps
My urologist informed me that I needed several scans to identify whether or not the cancer had spread yet. I'd need a CT scan "with contrast", I'd need a bone scan (when prostate cancer spreads, it typically moves quickly into the bones). I found out later that I had also received a referral to get a genetic test. This test helps you and your doctors know what cancer and other health risks you may have based off of what is known about genetics. I opted to not get this test.
My urologist discussed with me the four treatment options* that lay in front of me.
Option 1: Do nothing. Definitely not advised for most prostate cancer patients.
Option 2: Treat the cancer with chemotherapy. We've all heard how chemo isn't a targeted treatment and how badly the body reacts to it. While it can be very effective at killing prostate cancer, it can also harm other healthy parts and takes a toll on the body. Plus, if it doesn't completely eliminate the cancer, or if it comes back, the recommended treatment is prostate removal.
Option 3: Insertion of a radioactive rod, or "seed" near the cancerous part of the prostate. This would require some surgery of its own. Many people opt for this option but there are some things one must consider: The radiation will damage not just the prostate, but surrounding tissue as well. As with chemo, if the radiation doesn't completely eliminate the cancer, or if it comes back, the recommended treatment is prostate removal. But, because surrounding tissue has been damaged by the radiation, this tissue must be removed as well. One possible outcome from this is that the patient will require a colostomy bag for the rest of their life.
Option 4: Surgical removal of the prostate. While this has the best chance of success for "curing" the patient of prostate cancer once and for all, there are some drawbacks. The prostate actually performs most of the work of providing bladder continence (aka bladder control). While there are muscles present that can also perform this task, most men never use these muscles so they're weak and need to be trained if the prostate is removed. This will require the patient to use adult diapers and/or incontinence pads, at least for the short term. Additionally, the prostate is significantly responsible for male penis erection. Once the prostate is removed, a patient will likely have problems with erectile dysfunction (ED). There are numerous treatments for helping the patient overcome this problem, but (as my brother told me) "it'll never be a hard as it was before". Beyond just the prostate, the removal surgery also removes the seminal vesicles and some other glands by the prostate as they've been known to later develop cancer if they aren't removed as well.
*Option 5: After writing this article I found out about another treatment option I hadn't run across in any of my previous research. This option is the use of external radiation. There are a couple of different kinds, one is called "CyberKnife" and consists of 5, 20-minute treatments. There is also an older type of radiation which is 20, 5-minute treatments over the space of a little less than a month. They implant some "targets" which are made of gold. The process is similar to the one for the prostate biopsy, not fun but not terrible either. But once this is done, the treatment itself is easy: Pull your pants down slightly (no need to actually undress) then lay on the table for 5 or 20 minutes while the little radiation zapper thing moves around, and then it's done. No pain or discomfort. It's the least-invasive of all the procedures and seems to have excellent results.
There are actually a couple of other non-standard treatments for prostate cancer such as the use of sound frequencies to target and kill the cancer. Most of these other treatments are still in the research stage and, hopefully, they'll see high levels of success and offer equal or better results than the existing options.
Don't wait to decide and act - doing nothing doesn't make it go away.
When we discussed the treatment options, my urologist told me there was "no rush". I took him at his word on this for a couple of reasons. Mostly, given the options, I'd decided that my best option was to go for the surgical removal of the prostate. But even though my brother has successfully gone through this procedure, as had a close friend who found he had prostate cancer after I had been diagnosed, I was scared. Fear of the procedure and its side-effects kept me from getting treatment right away. Plus, I was involved in providing essential support at work that the surgery and recovery would have kept me from. Neither of these reasons were worth my life.
Finally, ten months after my initial diagnosis, I made an appointment with my urologist to discuss treatment. At this appointment we set a date a month and a half later (November 21, 2023) for prostate removal. With my wife at my side, the doctor discussed the side-effects of this surgery so nothing would come as a surprise. Since it had been so long since my diagnosis and CT scan, I was scheduled for another. Additionally, I'd never gotten the bone scan so that was scheduled. I got both of those completed less than a week and a half before my surgery. Lastly, I also needed a current PSA level check. Thankfully, the scans showed no spread of the cancer. [Hint: Go into those appointments well hydrated as you'll need an injection into your veins] However, my PSA had jumped from 7.37 to 13.23. One week after my treatment discussion appointment with the urologist, he called me with a sense of urgency requesting that I accept a new surgical date one month sooner. With fear in my heart, I accepted the new date - just a week and a half away on October 24, 2023. Both during this call, and during the Pre-Op appointment (which was just 4 days prior to the new surgery date), the doctor stated he felt that since it'd been so long since my original diagnosis and with my PSA level at 13.23, performing this surgery "sooner rather than later" was in my best interest. He had no additional information to go on but something was pushing him to get it done right away. I'll discuss why this was fortuitous later.
Kegels aren't just for the ladies
As I discussed before, urinary incontinence is a side effect of prostate removal. At the Pre-Op appointment, which for me was just 4 days before my surgery, the doctor told me to start working to strengthen those unused bladder muscles by doing male Kegel exercises for a few seconds each and 15 times per session, multiple times throughout the day. While you can find more information on these exercises here: https://www.mayoclinic.org/healthy-lifestyle/mens-health/in-depth/kegel-exercises-for-men/art-20045074, one of the best ways to perform these - and know you're doing them right, is to use your bladder muscles to stop your stream several times while you're urinating. Of course, once you've mentally identified the right muscles, you can (and should) perform these exercises even when you're not urinating. Even men who aren't dealing with prostate cancer can benefit from these exercises as they not only improve bladder control but can also improve sexual performance. Sadly, I'd only learned about these exercises during my Pre-Op appointment. I'd have fewer post-surgical issues with bladder incontinence had I been performing these exercises several months in advance.
Hydration is your friend
While I'd increased my water intake a day or two prior to my surgery, I wish I'd super-hydrated for a week prior. When I arrived the morning of my surgery, as they prepared me, I was given two IV's. Because I lean towards the "perpetually dehydrated", the nurses had a difficult time finding veins to insert the IVs into. While this was not only frustrating for the nurses, this was a bit painful for me. The better hydrated you are, the easier it is to find a vein. Lesson learned!
What to take with you to the hospital
While it's always advised to leave your valuables (wedding ring and other jewelry) at home and not bring them with you, there are a few things you'll want to have with you. Of course, I had my wallet with my identification with me, but I was able to leave these with my wife after my initial check-in.
If you're like me and suffer from sleep apnea, you'll absolutely want to bring a CPAP with you if you use one. Not only do I use a CPAP, but I also require supplemental oxygen. Prior to my surgical date I identified my CPAP and supplemental O2 flow rates and provided that to the nurses on the day of my surgery.
To the hospital I wore a pair of sweatpants, a loose t-shirt, short socks and untied tennis shoes. My pre-op instructions told me I'd need to have "loose fitting clothes" so this satisfied the requirement - plus, I knew I wouldn't be in any condition to bend over to tie my shoes later so my shoe choice worked well for me.
Surgery and Recovery Room
As you might imagine, I remember nothing of the actual surgery. I know they used robotic tools to perform the removal. I learned later that they slightly invert the table you're on to put your feet higher than your head. This allows organs to fall out of the way and give more room to access the prostate. Additionally, I had 5 separate incisions to accommodate everything. In discussing this surgery with others I've heard as few as 3 and as many as 5 incisions can be made, depending on the surgeon and the way the surgery is performed. One of the incisions was to allow for a line to be put in to pump gas into my abdomen. This helps open you up better for the surgeon to see and work. More on this later.
During the surgery they removed the prostate and surrounds glands and sent it all off to pathology. I was unaware that some amount of dissection of the bladder is performed. Because of all of the work involved, this surgery can take anywhere from 3 to 8 hours, with the average time about 5 hours. For me, actual surgical time was about 5 hours and 15 minutes.
In the post-surgical recovery room inflation sleeves are put onto your calves. These sleeves inflate and deflated to help with blood flow and reduce the possibility of blood clots. Before you'll be released from the recovery room to be taken to your hospital room you need to come out of anesthesia. Some folks, like me, tend to enjoy the sleep anesthesia provides (some say this is the best sleep you'll ever experience) and waking you up becomes a bit of a chore for the recovery room staff. I do recall hearing one nurse instruct me, more than once to "open your eyes". I also had considerable pain in my shoulder and down into my fingers from the time I'd been inverted. It took considerable effort and some time for me to be able to move my hands and fingers. Part of this goes back to shoulder issues I've had for almost 40 years but a little movement helps alleviate the pain and get blood flowing properly back into your hands and fingers. However, for 2 days after the surgery I still had tingling and numbness in 3 fingers on my left hand. Uncommon side-effect, but not totally unheard of.
Hospital Room and Care
I don't remember being wheeled from the recovery room to my hospital room, but I'm told I was awake; mostly. While most folks are discharged the day following their surgery, some folks need to stay for up to 5 days. I spent 2 nights.
When I started to get my wits about myself, I found that I had lots of things hanging off of me. I do, vaguely recall my wife and the nurses setting up my CPAP and getting it put on me with a separate cannula in my nose for supplemental oxygen. I still had two IV's providing not just saline fluids but also to provide me with medications. Additionally, I had a urine collection bag with a catheter. I had those lovely (yeah, I actually liked them) anti-clotting sleeves on my calves and something unexpected. I had a thin tube coming out of my abdomen with a bulb attached. This was a drain line to help remove excess blood/fluids from my abdomen. Occasionally one of the nurses would come in and pump the bulb to pull out fluids and to keep pressure on the line. It felt a bit uncomfortable as they did this - sort of like someone had a straw in my belly and was creating a vacuum.
It took a few more hours, after being brought to my room, for the anesthesia to completely (mostly?) wear off so I slept a lot. During this time, I had multiple nurses in and out checking on me often. I was always relieved when I awoke to see my wife at the end of the bed. She'll never know just how much comfort that gave me and I'm blessed she was with me.
Gas, Gas, Gas
It didn't take long for the pain from all of the gas they'd put inside of me to start. I'd been warned about this but one can never be fully prepared for it. Sure, I've had bad gas pains before, but never with an abdomen that felt like I'd gone 12 rounds with Rocky Balboa. On the 1-10 pain scale this was easily an 8+. While other things were sore, it was the gas pain that caused me the most noticeable pain and discomfort. Some folks who've been through this experience this pain for 5 days. One person I know said he only experienced it for 1/2 hour. For me, the pain was bad for me for almost 2 days. I've also heard some folks feel this gas pain up into their shoulders where it creates more pain. I was blessed in not having to deal with that, or more shoulder pain. Thing is, none of the medication they were giving me to control the pain seemed to be having any effect. I was getting Oxy and they gave me Toradal and it might as well have been a placebo. Finally, before going to sleep my second night in the hospital, they gave me an "oxy concoction" with something(s) added to the oxy in the IV. Whatever it was took the edge off of the pain for the first time since post-surgery and I was able to get some good sleep.
Eventually, in the early evening, I was brought a tray of soft foods and juices. We're talking Jell-O, pudding, broth, and I don't remember what else, but it was a banquet - and since I hadn't eaten in a day, I ate it all. Then, it was time for me (with the assistance of nurses) to get up and walk. One of the IV lines was disconnected and the O2 line and anti-clotting sleeves were removed. With help, I sat up, stood up, and walked a short circuit around the nurses' station in the hallway. That winded me. I didn't get back up to walk until the next day, where I got up for about 4 or 5 more walks, all longer than the first.
Catheter Bags, Urinary Spit-Takes and Why is it Orange?
The type of catheter used is called a Foley catheter, typically it's just referred to as a "Foley". You need to remain well hydrated. Not only is hydration important for healing but also to help remove clots and other things from your system and bladder. The catheter bag will fill up more quickly than you'd think and while you're in the hospital, and for a few days after you'll probably note that your urine is orange. While I suspect this is partially due to the presence of blood in the urine, we were told at the hospital it was because of an antibiotic being put into my IV. Either way, the orange color and clots present in the bag are normal and nothing to be worried about. The orange-colored urine lasts for about 3-5 days post-surgery.
One might assume that since you've got a catheter in you wouldn't have any leakage. One would be wrong. While the catheter catches most of your urine you will have leakage. If you sneeze, cough or laugh, you'll leak like a spit-take (I recommend doing none of those things for several days, but if you do, have a thick pillow ready to place over your abdomen, it helps a lot). If you don't know what a spit-take is, please google it. You'll have the catheter for 10 days to 2 weeks (my brother had his for 3 weeks). During that time, you'll leak, a lot. A LOT. BEFORE you go in for the surgery, ensure you pick up some adult diapers. You'll want the type with the side closures, not the briefs style as they can pinch off the flow from the catheter and get the ones made for high volume! You'll also want to pick up some heavy flow incontinence pads, lots of them, as well as "chucks" (aka "bed pads"). Even with the diaper, and the pads, you'll leak more than you'd think and the chuck will protect your bedding. Of course, you can use the disposable chucks but they're thin and move around easily. I've found the re-usable chucks to be thick, larger and stay put better than the disposables. Get the XL size. Amazon has them (https://www.amazon.com/Reusable-Underpad-Protection-Vakly-Incontinence/dp/B071N9Y2W3/ref=asc_df_B071N9Y2W3/?tag=hyprod-20&linkCode=df0&hvadid=242003539383&hvpos=&hvnetw=g&hvrand=16212989691678713706&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9029025&hvtargid=pla-449945352642&mcid=507743c33a53361cbd4ef888b4db86a5&th=1). You can get 1 for $15.99 or 3 for $37.99; buy the 3 pack - they're worth the investment. Does CVS or Walgreens carry them? Sometimes. Better to get them in advance and have them as soon as you get home from the hospital. You'll especially need these things once the catheter is removed. You can thank me later.
Real Food - or is it
Following my evening meal my first night in the hospital, my urologist examined and spoke with me and advised that I could have solid food the next morning. While I looked forward to this, I also knew it'd bring with it solid waste. Thankfully the hospital had me on stool softeners and we'd picked up a bottle for home already too. These are important; not just immediately following surgery, but also for a few days following getting the catheter removed. You DO NOT want to be pushing to vacate either your bowels nor your bladder for some time. Once you get home, keep taking the stool softener for a few weeks and then taper off of them to give your body a chance to adjust. You need plenty of time for everything to heal. Turns out that much of the "food" on the solid food trays was considerably less palpable than the food on the soft-food tray had been so I passed on eating much of it.
Going Home
Once your pain levels are down (I found out later the magic pain-level chart number was 4), and you've walked, your doctor will release you from the hospital. But you can't drive yourself, you have to have someone there who will drive you home and can stay with you for the first 24 hours, minimum. Without any of these things, you're staying in the hospital. Lots of folks are released the day following their surgery. Some folks are there as long as 5 days. I had to stay 2 nights. Every person's experience is unique and you need to realize this whole thing is a process that takes time. It's important to note that you will be sent home with several medications which you'll need to set up a schedule to take throughout the day. Proper care and cleanliness of the Foley will also be required. Using soap and water, wash around the meatus at the entry point of the Foley catheter. Rinse well. Place a small amount of bacitracin ointment around the meatus. Do this four times a day. This is necessary for health as well as hygiene reasons.
Don't try to rush your recovery. Just when you think you're progressing very well, something comes up to remind you that you're not quite ready to resume your life. For me, last night, almost 3 weeks since my surgery, I rolled over in bed onto my stomach. Wrong move. My body quickly reminded me that I have 5 incisions that are still healing. Then today, I felt I needed to vacate my bowels, on my way to do that I had a gas bubble that sat itself right over where my prostate had been. Had I not been standing next to a wall to catch myself; I would have fallen to the floor in pain. Healing takes time.
What your doctor should tell you before releasing you is that you can't drive until after the catheter is removed. This is important to follow. Additionally, your doctor should tell you not to lift anything over 10 pounds (or, as my doctor told me, "Nothing heavier than a gallon of milk"). The reason for this is that your incisions can take months to fully heal. They may look and feel good, but these are weak points in your abdomen and, depending on how much you exert yourself, could result in a hernia. If you think you had problems before, a hernia can elevate things ten-fold. While surgeons use differing processes, many are now closing the incisions with a type of glue. In my case, during the surgery they inserted a type of glue into the incisions that is made to get pushed out of the wound as it starts to heal. It kind of looks like an ointment, or salve. To someone unaware of this product is can look a bit like an infection. It is not as its presence is normal. Having someone watching the wounds for unusual swelling or redness is encouraged in case of potential infection issues.
Before leaving the hospital, they'll provide you with another large catheter bag and one or more smaller bags that can be strapped to your leg to wear under clothes if you decide to go out. Advice for the leg strap: don't strap it on too tight, trust me on this. Changing out the catheter bags is easy in concept, but I found it really isn't an obvious process. Ask the nurses at the hospital to show you and the person who'll be staying with you how to switch out the bags. You'll be glad you did. Anywhere you move you'll need to first grab the catheter bag, then move. I forgot this a couple of times. Luckily, I didn't pull on the catheter in me, only on the bag. To aid in proper flow, you'll need to keep the catheter bag below the level of your abdomen. As a suggestion, keep a bucket next to your bed so your wife/girlfriend/whoever is caring for you can empty the bag while you're sleeping.
Two weeks post-op follow-up appointment and catheter removal
Fourteen days with a catheter sucked. Catheters suck. You've got leakage. You have to constantly work the hose down to the bag to get the urine into the bag (seems like vacuum issues occurred prohibiting the flow). You've got discomfort and sometimes pain from the catheter up your urethra into your bladder. There are times you feel you've got a full bladder but nothing will come out. Yep, catheters suck. Even so, my brother told me that the removal was "the worse pain he's ever experienced" and a buddy told me it hurt like hell to be removed. As much as I wanted the catheter out, I was scared of those few seconds of pain it would take to make it happen. Maybe it was just a skilled nurse or maybe I was especially blessed, but the removal for me was mildly uncomfortable for 2 seconds, nothing more. The catheter itself had caused me considerably more pain at times while it was in than the removal caused. Whew!
Now, I don't know if it's because the urethra got stretched by the catheter or what, but one-week post-catheter I'm still experiencing times where I'm leaking and I don't even feel the leaking. And, yep, I'm leaking a lot. I'm getting a little bit of control some of the time. One situation where I have no control is when I stand up from a sitting or lying position. I'm going through a LOT of pads. This brings up another consideration: smell. That much urine in all of those pads/diapers will create lots of urine smell. My wife came up with the brilliant idea to put those items into doggy poop bags and tie them tight. Problem solved.
As my wife keeps reminding me when I express my frustration over not being able to control my urinary continence, "It takes time". Some men have it all under control in a month or two while others deal with at least some amount of leakage for years. Practice the Kegel's several times a day and understand that it takes time.
Pathology Report
As I said earlier, don't wait to decide on which treatment you want to pursue and don't wait to get it done. My urologist pushed my surgical date up by a month because he felt it was needed, with nothing other than the time it'd been since the initial diagnosis and the new PSA level. At the 2-week post-surgical/catheter removal appointment he came to see me once the catheter was removed. He had the pathology report from the surgery and he went through the information with me. Thirty percent of the prostate had cancer in it and 5% of the prostate was Gleeson Grade Group 5 "Very High" risk. The report also indicated that a "bubble" of cancer had worked itself to the outer edge of the prostate and was ready to pop at any time which would have spread the cancer around my body. Had I waited for the original November 21st surgical date, instead of getting it completed on October 24th as I did, the bubble likely would have popped by then. Whatever drove the urologist to push forward the surgical date by one month saved my life. I almost waited too long. I am truly blessed!
Going back to work and resuming normal life
Today it's been 3 weeks since I underwent my prostatectomy (prostate removal surgery). I know I've still got a lot of recovery ahead of me and after my episode of pain today I know I'm not physically ready to return to work. I made arrangements before surgery to be off work for 6 weeks. I knew at the time that I might be ready sooner or I might need even more time. I based my 6 weeks off of the average time needed by the 1/2 dozen men I'd talked to that have gone through this process. Even when I return to work it will be 6 months or more where I'll need to watch myself and not over-exert myself physically. Each person is different. Some need more time; some need much less. The one thing I know now is I'm the only one who can/will/should advocate for my own health and well-being and I know that pushing to do things before my body is ready for it will take a toll, I'll pay a price for later. It isn't worth it so I'll continue to allow my body the time needed to fully recover.
If you're reading this because you're dealing with this same issue, I wish you the best and pray you'll recover and "be cured" as I now likely am. If you need to talk with me for comfort or understanding of what lays in front of you, I encourage you to reach out to me.
Ginsue / Thomas
Prostate Cancer Survivor
For a couple of years, I'd sensed a bit of change in my sense of urgency to urinate but it wasn't significant so it was easy to dismiss. Then, in the fall of 2021 I learned my brother was diagnosed with prostate cancer. He had his prostate removed in January, 2022 and there is no longer any sign of cancer in his body. During this time, I found out that my 81-year-old dad also had prostate cancer but was advised that it wouldn't be an issue for him due to his age.
In the last two years I've heard it said many times that every man, if they live long enough, will eventually have prostate cancer. Here's my story. I hope this helps anyone else who goes through this. Let's face it: Cancer, "the big C", is scary. The good news is that if you catch it in time, and if you get it treated in time, Prostate Cancer is probably the most survivable type of cancer you can get.
You must be your own advocate for your health care
At 57 years old, I'd been attempting to get my primary care provider to get me cancer screening for years. Each request went with assurances from the provider that he'd make it happen, but it never did. Sometime in the summer of 2022 I was assigned to a new primary care provider. So, in October, 2022, when I was called by my primary care providers nurse that I needed to have a blood test before I could have my medication prescriptions renewed, I insisted on getting cancer screening. After conferring with the doctor, the nurse called me back and informed me that a Prostate Specific Antigen (PSA) test was added to the annual blood tests. She also informed me the doctor had been hesitant to add this as "you didn't meet the criteria". What? I have a family history of prostate cancer, I was a 57-year-old male with a prostate, exactly WHAT criteria did I not meet? I got no answer to that question. I had concerns and medical testing was the only thing that would be able to prove or disprove any health risks. I learned that I had to be my own best advocate to get the screenings I needed.
Get screened
Until recently, the medical profession has advised men over 50 years old to get annual PSA level screening. Within the last few years many professionals in the medical field are advising men over 40 to begin this testing. My advice is to begin at 40. As with any cancer, early detection will be the key to removal without it spreading. If your health care provider or insurance won't provide this screening, find someone who will. This is your life and your health on the line, fight for it.
Know your numbers
When the results of the blood test came back, I was informed that my PSA level was 7.37. For reference, "healthy PSA levels" are 4 or lower. A 7.37 indicated potential for cancer. But, it's important to note (thank you to my dear friend Bert for reminding me of this): While PSA scores are an important indicator of potential problems, they are not an absolute and are only an indicator. If you have a PSA screen and it comes back elevated it doesn’t definitively mean you have prostate cancer. You might not have anything other than a few years under your belt. PSA's can be elevated for any number of reasons. Find a competent Urologist and follow through.
The Urology referral and biopsy
Due to the increased PSA level, I was given a referral to a urologist. The first urology appointment had a "flow-rate test" and an ultrasound to both check the size of my prostate and to identify how effectively I'd vacated my bladder. While the bladder was slightly enlarged, the ultrasound showed I'd been able to almost completely vacate my bladder - good signs. In meeting with the urologist, I was told I'd need a biopsy of my prostate to check for cancer. I was also told that the prostate is about the size of a walnut, sort of shaped like a doughnut that's slightly squished at the top and bottom across the middle, creating a left and right half.
A couple of weeks later I was back at the urologist office for the biopsy. While the procedure was uncomfortable, it was mostly due to embarrassment. The device they use to grab the samples makes a loud click as it grabs the sample but it's subdued when inside of you. The doctor obtained 12 samples; 2 each from the top, middle and bottom of each side of the prostate. The actual procedure only took about 15 minutes and then I was allowed to dress. Because tissue was taken, there was going to be some bleeding and things were a little tender for about a day.
Biopsy results
Within a week of the biopsy, I was called back to the urologist to go over the results. Of the 12 samples, all 6 samples from the left side of my prostate showed cancer; none on the right. It was then I was told my "Gleeson Score" and how the samples rated. Most of the samples rated in the "Low/Very Low" risk group, but one sample was in the Intermediate risk group. I mistakenly understood this sample was in "Grade Group 2" but later found out it was "Grade Group 3" (high end of the Intermediate risk).
95220
To learn more about the Gleeson Score, check out this website: https://www.pcf.org/about-prostate-cancer/diagnosis-staging-prostate-cancer/gleason-score-isup-grade/
Treatment options and next steps
My urologist informed me that I needed several scans to identify whether or not the cancer had spread yet. I'd need a CT scan "with contrast", I'd need a bone scan (when prostate cancer spreads, it typically moves quickly into the bones). I found out later that I had also received a referral to get a genetic test. This test helps you and your doctors know what cancer and other health risks you may have based off of what is known about genetics. I opted to not get this test.
My urologist discussed with me the four treatment options* that lay in front of me.
Option 1: Do nothing. Definitely not advised for most prostate cancer patients.
Option 2: Treat the cancer with chemotherapy. We've all heard how chemo isn't a targeted treatment and how badly the body reacts to it. While it can be very effective at killing prostate cancer, it can also harm other healthy parts and takes a toll on the body. Plus, if it doesn't completely eliminate the cancer, or if it comes back, the recommended treatment is prostate removal.
Option 3: Insertion of a radioactive rod, or "seed" near the cancerous part of the prostate. This would require some surgery of its own. Many people opt for this option but there are some things one must consider: The radiation will damage not just the prostate, but surrounding tissue as well. As with chemo, if the radiation doesn't completely eliminate the cancer, or if it comes back, the recommended treatment is prostate removal. But, because surrounding tissue has been damaged by the radiation, this tissue must be removed as well. One possible outcome from this is that the patient will require a colostomy bag for the rest of their life.
Option 4: Surgical removal of the prostate. While this has the best chance of success for "curing" the patient of prostate cancer once and for all, there are some drawbacks. The prostate actually performs most of the work of providing bladder continence (aka bladder control). While there are muscles present that can also perform this task, most men never use these muscles so they're weak and need to be trained if the prostate is removed. This will require the patient to use adult diapers and/or incontinence pads, at least for the short term. Additionally, the prostate is significantly responsible for male penis erection. Once the prostate is removed, a patient will likely have problems with erectile dysfunction (ED). There are numerous treatments for helping the patient overcome this problem, but (as my brother told me) "it'll never be a hard as it was before". Beyond just the prostate, the removal surgery also removes the seminal vesicles and some other glands by the prostate as they've been known to later develop cancer if they aren't removed as well.
*Option 5: After writing this article I found out about another treatment option I hadn't run across in any of my previous research. This option is the use of external radiation. There are a couple of different kinds, one is called "CyberKnife" and consists of 5, 20-minute treatments. There is also an older type of radiation which is 20, 5-minute treatments over the space of a little less than a month. They implant some "targets" which are made of gold. The process is similar to the one for the prostate biopsy, not fun but not terrible either. But once this is done, the treatment itself is easy: Pull your pants down slightly (no need to actually undress) then lay on the table for 5 or 20 minutes while the little radiation zapper thing moves around, and then it's done. No pain or discomfort. It's the least-invasive of all the procedures and seems to have excellent results.
There are actually a couple of other non-standard treatments for prostate cancer such as the use of sound frequencies to target and kill the cancer. Most of these other treatments are still in the research stage and, hopefully, they'll see high levels of success and offer equal or better results than the existing options.
Don't wait to decide and act - doing nothing doesn't make it go away.
When we discussed the treatment options, my urologist told me there was "no rush". I took him at his word on this for a couple of reasons. Mostly, given the options, I'd decided that my best option was to go for the surgical removal of the prostate. But even though my brother has successfully gone through this procedure, as had a close friend who found he had prostate cancer after I had been diagnosed, I was scared. Fear of the procedure and its side-effects kept me from getting treatment right away. Plus, I was involved in providing essential support at work that the surgery and recovery would have kept me from. Neither of these reasons were worth my life.
Finally, ten months after my initial diagnosis, I made an appointment with my urologist to discuss treatment. At this appointment we set a date a month and a half later (November 21, 2023) for prostate removal. With my wife at my side, the doctor discussed the side-effects of this surgery so nothing would come as a surprise. Since it had been so long since my diagnosis and CT scan, I was scheduled for another. Additionally, I'd never gotten the bone scan so that was scheduled. I got both of those completed less than a week and a half before my surgery. Lastly, I also needed a current PSA level check. Thankfully, the scans showed no spread of the cancer. [Hint: Go into those appointments well hydrated as you'll need an injection into your veins] However, my PSA had jumped from 7.37 to 13.23. One week after my treatment discussion appointment with the urologist, he called me with a sense of urgency requesting that I accept a new surgical date one month sooner. With fear in my heart, I accepted the new date - just a week and a half away on October 24, 2023. Both during this call, and during the Pre-Op appointment (which was just 4 days prior to the new surgery date), the doctor stated he felt that since it'd been so long since my original diagnosis and with my PSA level at 13.23, performing this surgery "sooner rather than later" was in my best interest. He had no additional information to go on but something was pushing him to get it done right away. I'll discuss why this was fortuitous later.
Kegels aren't just for the ladies
As I discussed before, urinary incontinence is a side effect of prostate removal. At the Pre-Op appointment, which for me was just 4 days before my surgery, the doctor told me to start working to strengthen those unused bladder muscles by doing male Kegel exercises for a few seconds each and 15 times per session, multiple times throughout the day. While you can find more information on these exercises here: https://www.mayoclinic.org/healthy-lifestyle/mens-health/in-depth/kegel-exercises-for-men/art-20045074, one of the best ways to perform these - and know you're doing them right, is to use your bladder muscles to stop your stream several times while you're urinating. Of course, once you've mentally identified the right muscles, you can (and should) perform these exercises even when you're not urinating. Even men who aren't dealing with prostate cancer can benefit from these exercises as they not only improve bladder control but can also improve sexual performance. Sadly, I'd only learned about these exercises during my Pre-Op appointment. I'd have fewer post-surgical issues with bladder incontinence had I been performing these exercises several months in advance.
Hydration is your friend
While I'd increased my water intake a day or two prior to my surgery, I wish I'd super-hydrated for a week prior. When I arrived the morning of my surgery, as they prepared me, I was given two IV's. Because I lean towards the "perpetually dehydrated", the nurses had a difficult time finding veins to insert the IVs into. While this was not only frustrating for the nurses, this was a bit painful for me. The better hydrated you are, the easier it is to find a vein. Lesson learned!
What to take with you to the hospital
While it's always advised to leave your valuables (wedding ring and other jewelry) at home and not bring them with you, there are a few things you'll want to have with you. Of course, I had my wallet with my identification with me, but I was able to leave these with my wife after my initial check-in.
If you're like me and suffer from sleep apnea, you'll absolutely want to bring a CPAP with you if you use one. Not only do I use a CPAP, but I also require supplemental oxygen. Prior to my surgical date I identified my CPAP and supplemental O2 flow rates and provided that to the nurses on the day of my surgery.
To the hospital I wore a pair of sweatpants, a loose t-shirt, short socks and untied tennis shoes. My pre-op instructions told me I'd need to have "loose fitting clothes" so this satisfied the requirement - plus, I knew I wouldn't be in any condition to bend over to tie my shoes later so my shoe choice worked well for me.
Surgery and Recovery Room
As you might imagine, I remember nothing of the actual surgery. I know they used robotic tools to perform the removal. I learned later that they slightly invert the table you're on to put your feet higher than your head. This allows organs to fall out of the way and give more room to access the prostate. Additionally, I had 5 separate incisions to accommodate everything. In discussing this surgery with others I've heard as few as 3 and as many as 5 incisions can be made, depending on the surgeon and the way the surgery is performed. One of the incisions was to allow for a line to be put in to pump gas into my abdomen. This helps open you up better for the surgeon to see and work. More on this later.
During the surgery they removed the prostate and surrounds glands and sent it all off to pathology. I was unaware that some amount of dissection of the bladder is performed. Because of all of the work involved, this surgery can take anywhere from 3 to 8 hours, with the average time about 5 hours. For me, actual surgical time was about 5 hours and 15 minutes.
In the post-surgical recovery room inflation sleeves are put onto your calves. These sleeves inflate and deflated to help with blood flow and reduce the possibility of blood clots. Before you'll be released from the recovery room to be taken to your hospital room you need to come out of anesthesia. Some folks, like me, tend to enjoy the sleep anesthesia provides (some say this is the best sleep you'll ever experience) and waking you up becomes a bit of a chore for the recovery room staff. I do recall hearing one nurse instruct me, more than once to "open your eyes". I also had considerable pain in my shoulder and down into my fingers from the time I'd been inverted. It took considerable effort and some time for me to be able to move my hands and fingers. Part of this goes back to shoulder issues I've had for almost 40 years but a little movement helps alleviate the pain and get blood flowing properly back into your hands and fingers. However, for 2 days after the surgery I still had tingling and numbness in 3 fingers on my left hand. Uncommon side-effect, but not totally unheard of.
Hospital Room and Care
I don't remember being wheeled from the recovery room to my hospital room, but I'm told I was awake; mostly. While most folks are discharged the day following their surgery, some folks need to stay for up to 5 days. I spent 2 nights.
When I started to get my wits about myself, I found that I had lots of things hanging off of me. I do, vaguely recall my wife and the nurses setting up my CPAP and getting it put on me with a separate cannula in my nose for supplemental oxygen. I still had two IV's providing not just saline fluids but also to provide me with medications. Additionally, I had a urine collection bag with a catheter. I had those lovely (yeah, I actually liked them) anti-clotting sleeves on my calves and something unexpected. I had a thin tube coming out of my abdomen with a bulb attached. This was a drain line to help remove excess blood/fluids from my abdomen. Occasionally one of the nurses would come in and pump the bulb to pull out fluids and to keep pressure on the line. It felt a bit uncomfortable as they did this - sort of like someone had a straw in my belly and was creating a vacuum.
It took a few more hours, after being brought to my room, for the anesthesia to completely (mostly?) wear off so I slept a lot. During this time, I had multiple nurses in and out checking on me often. I was always relieved when I awoke to see my wife at the end of the bed. She'll never know just how much comfort that gave me and I'm blessed she was with me.
Gas, Gas, Gas
It didn't take long for the pain from all of the gas they'd put inside of me to start. I'd been warned about this but one can never be fully prepared for it. Sure, I've had bad gas pains before, but never with an abdomen that felt like I'd gone 12 rounds with Rocky Balboa. On the 1-10 pain scale this was easily an 8+. While other things were sore, it was the gas pain that caused me the most noticeable pain and discomfort. Some folks who've been through this experience this pain for 5 days. One person I know said he only experienced it for 1/2 hour. For me, the pain was bad for me for almost 2 days. I've also heard some folks feel this gas pain up into their shoulders where it creates more pain. I was blessed in not having to deal with that, or more shoulder pain. Thing is, none of the medication they were giving me to control the pain seemed to be having any effect. I was getting Oxy and they gave me Toradal and it might as well have been a placebo. Finally, before going to sleep my second night in the hospital, they gave me an "oxy concoction" with something(s) added to the oxy in the IV. Whatever it was took the edge off of the pain for the first time since post-surgery and I was able to get some good sleep.
Eventually, in the early evening, I was brought a tray of soft foods and juices. We're talking Jell-O, pudding, broth, and I don't remember what else, but it was a banquet - and since I hadn't eaten in a day, I ate it all. Then, it was time for me (with the assistance of nurses) to get up and walk. One of the IV lines was disconnected and the O2 line and anti-clotting sleeves were removed. With help, I sat up, stood up, and walked a short circuit around the nurses' station in the hallway. That winded me. I didn't get back up to walk until the next day, where I got up for about 4 or 5 more walks, all longer than the first.
Catheter Bags, Urinary Spit-Takes and Why is it Orange?
The type of catheter used is called a Foley catheter, typically it's just referred to as a "Foley". You need to remain well hydrated. Not only is hydration important for healing but also to help remove clots and other things from your system and bladder. The catheter bag will fill up more quickly than you'd think and while you're in the hospital, and for a few days after you'll probably note that your urine is orange. While I suspect this is partially due to the presence of blood in the urine, we were told at the hospital it was because of an antibiotic being put into my IV. Either way, the orange color and clots present in the bag are normal and nothing to be worried about. The orange-colored urine lasts for about 3-5 days post-surgery.
One might assume that since you've got a catheter in you wouldn't have any leakage. One would be wrong. While the catheter catches most of your urine you will have leakage. If you sneeze, cough or laugh, you'll leak like a spit-take (I recommend doing none of those things for several days, but if you do, have a thick pillow ready to place over your abdomen, it helps a lot). If you don't know what a spit-take is, please google it. You'll have the catheter for 10 days to 2 weeks (my brother had his for 3 weeks). During that time, you'll leak, a lot. A LOT. BEFORE you go in for the surgery, ensure you pick up some adult diapers. You'll want the type with the side closures, not the briefs style as they can pinch off the flow from the catheter and get the ones made for high volume! You'll also want to pick up some heavy flow incontinence pads, lots of them, as well as "chucks" (aka "bed pads"). Even with the diaper, and the pads, you'll leak more than you'd think and the chuck will protect your bedding. Of course, you can use the disposable chucks but they're thin and move around easily. I've found the re-usable chucks to be thick, larger and stay put better than the disposables. Get the XL size. Amazon has them (https://www.amazon.com/Reusable-Underpad-Protection-Vakly-Incontinence/dp/B071N9Y2W3/ref=asc_df_B071N9Y2W3/?tag=hyprod-20&linkCode=df0&hvadid=242003539383&hvpos=&hvnetw=g&hvrand=16212989691678713706&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9029025&hvtargid=pla-449945352642&mcid=507743c33a53361cbd4ef888b4db86a5&th=1). You can get 1 for $15.99 or 3 for $37.99; buy the 3 pack - they're worth the investment. Does CVS or Walgreens carry them? Sometimes. Better to get them in advance and have them as soon as you get home from the hospital. You'll especially need these things once the catheter is removed. You can thank me later.
Real Food - or is it
Following my evening meal my first night in the hospital, my urologist examined and spoke with me and advised that I could have solid food the next morning. While I looked forward to this, I also knew it'd bring with it solid waste. Thankfully the hospital had me on stool softeners and we'd picked up a bottle for home already too. These are important; not just immediately following surgery, but also for a few days following getting the catheter removed. You DO NOT want to be pushing to vacate either your bowels nor your bladder for some time. Once you get home, keep taking the stool softener for a few weeks and then taper off of them to give your body a chance to adjust. You need plenty of time for everything to heal. Turns out that much of the "food" on the solid food trays was considerably less palpable than the food on the soft-food tray had been so I passed on eating much of it.
Going Home
Once your pain levels are down (I found out later the magic pain-level chart number was 4), and you've walked, your doctor will release you from the hospital. But you can't drive yourself, you have to have someone there who will drive you home and can stay with you for the first 24 hours, minimum. Without any of these things, you're staying in the hospital. Lots of folks are released the day following their surgery. Some folks are there as long as 5 days. I had to stay 2 nights. Every person's experience is unique and you need to realize this whole thing is a process that takes time. It's important to note that you will be sent home with several medications which you'll need to set up a schedule to take throughout the day. Proper care and cleanliness of the Foley will also be required. Using soap and water, wash around the meatus at the entry point of the Foley catheter. Rinse well. Place a small amount of bacitracin ointment around the meatus. Do this four times a day. This is necessary for health as well as hygiene reasons.
Don't try to rush your recovery. Just when you think you're progressing very well, something comes up to remind you that you're not quite ready to resume your life. For me, last night, almost 3 weeks since my surgery, I rolled over in bed onto my stomach. Wrong move. My body quickly reminded me that I have 5 incisions that are still healing. Then today, I felt I needed to vacate my bowels, on my way to do that I had a gas bubble that sat itself right over where my prostate had been. Had I not been standing next to a wall to catch myself; I would have fallen to the floor in pain. Healing takes time.
What your doctor should tell you before releasing you is that you can't drive until after the catheter is removed. This is important to follow. Additionally, your doctor should tell you not to lift anything over 10 pounds (or, as my doctor told me, "Nothing heavier than a gallon of milk"). The reason for this is that your incisions can take months to fully heal. They may look and feel good, but these are weak points in your abdomen and, depending on how much you exert yourself, could result in a hernia. If you think you had problems before, a hernia can elevate things ten-fold. While surgeons use differing processes, many are now closing the incisions with a type of glue. In my case, during the surgery they inserted a type of glue into the incisions that is made to get pushed out of the wound as it starts to heal. It kind of looks like an ointment, or salve. To someone unaware of this product is can look a bit like an infection. It is not as its presence is normal. Having someone watching the wounds for unusual swelling or redness is encouraged in case of potential infection issues.
Before leaving the hospital, they'll provide you with another large catheter bag and one or more smaller bags that can be strapped to your leg to wear under clothes if you decide to go out. Advice for the leg strap: don't strap it on too tight, trust me on this. Changing out the catheter bags is easy in concept, but I found it really isn't an obvious process. Ask the nurses at the hospital to show you and the person who'll be staying with you how to switch out the bags. You'll be glad you did. Anywhere you move you'll need to first grab the catheter bag, then move. I forgot this a couple of times. Luckily, I didn't pull on the catheter in me, only on the bag. To aid in proper flow, you'll need to keep the catheter bag below the level of your abdomen. As a suggestion, keep a bucket next to your bed so your wife/girlfriend/whoever is caring for you can empty the bag while you're sleeping.
Two weeks post-op follow-up appointment and catheter removal
Fourteen days with a catheter sucked. Catheters suck. You've got leakage. You have to constantly work the hose down to the bag to get the urine into the bag (seems like vacuum issues occurred prohibiting the flow). You've got discomfort and sometimes pain from the catheter up your urethra into your bladder. There are times you feel you've got a full bladder but nothing will come out. Yep, catheters suck. Even so, my brother told me that the removal was "the worse pain he's ever experienced" and a buddy told me it hurt like hell to be removed. As much as I wanted the catheter out, I was scared of those few seconds of pain it would take to make it happen. Maybe it was just a skilled nurse or maybe I was especially blessed, but the removal for me was mildly uncomfortable for 2 seconds, nothing more. The catheter itself had caused me considerably more pain at times while it was in than the removal caused. Whew!
Now, I don't know if it's because the urethra got stretched by the catheter or what, but one-week post-catheter I'm still experiencing times where I'm leaking and I don't even feel the leaking. And, yep, I'm leaking a lot. I'm getting a little bit of control some of the time. One situation where I have no control is when I stand up from a sitting or lying position. I'm going through a LOT of pads. This brings up another consideration: smell. That much urine in all of those pads/diapers will create lots of urine smell. My wife came up with the brilliant idea to put those items into doggy poop bags and tie them tight. Problem solved.
As my wife keeps reminding me when I express my frustration over not being able to control my urinary continence, "It takes time". Some men have it all under control in a month or two while others deal with at least some amount of leakage for years. Practice the Kegel's several times a day and understand that it takes time.
Pathology Report
As I said earlier, don't wait to decide on which treatment you want to pursue and don't wait to get it done. My urologist pushed my surgical date up by a month because he felt it was needed, with nothing other than the time it'd been since the initial diagnosis and the new PSA level. At the 2-week post-surgical/catheter removal appointment he came to see me once the catheter was removed. He had the pathology report from the surgery and he went through the information with me. Thirty percent of the prostate had cancer in it and 5% of the prostate was Gleeson Grade Group 5 "Very High" risk. The report also indicated that a "bubble" of cancer had worked itself to the outer edge of the prostate and was ready to pop at any time which would have spread the cancer around my body. Had I waited for the original November 21st surgical date, instead of getting it completed on October 24th as I did, the bubble likely would have popped by then. Whatever drove the urologist to push forward the surgical date by one month saved my life. I almost waited too long. I am truly blessed!
Going back to work and resuming normal life
Today it's been 3 weeks since I underwent my prostatectomy (prostate removal surgery). I know I've still got a lot of recovery ahead of me and after my episode of pain today I know I'm not physically ready to return to work. I made arrangements before surgery to be off work for 6 weeks. I knew at the time that I might be ready sooner or I might need even more time. I based my 6 weeks off of the average time needed by the 1/2 dozen men I'd talked to that have gone through this process. Even when I return to work it will be 6 months or more where I'll need to watch myself and not over-exert myself physically. Each person is different. Some need more time; some need much less. The one thing I know now is I'm the only one who can/will/should advocate for my own health and well-being and I know that pushing to do things before my body is ready for it will take a toll, I'll pay a price for later. It isn't worth it so I'll continue to allow my body the time needed to fully recover.
If you're reading this because you're dealing with this same issue, I wish you the best and pray you'll recover and "be cured" as I now likely am. If you need to talk with me for comfort or understanding of what lays in front of you, I encourage you to reach out to me.
Ginsue / Thomas
Prostate Cancer Survivor