Last updated: 1 March 2020
Everyone’s busy in this day and age, and you probably don’t have time to go through each and every brilliantly written post on this blog. This synopsis is meant to give you the Reader’s Digest version of my journey so far.
I was diagnosed with prostate cancer in November 2010 with a positive DRE, PSA of 5.0 ng/ml, and a pre-surgery Gleason of 3+3=6. On 4 January 2011, I underwent a robotic radical prostatectomy. The pathology after the surgery indicated a Gleason of 3+4=7, and a T2c N0 M0 tumor (negative margins; no lymph node involvement). One nerve bundle had to be removed; the other was spared.
My post-surgery PSA checks consistently came back as undetectable (<0.03 ng/ml) each and every time. I was hoping to close in on the 5-year mark with that being the case, but in September 2015, my PSA came back detectable at 0.05 ng/ml. That’s still well below the 0.2 ng/ml that historically defines biochemical recurrence of the prostate cancer, but it was enough to put me back onto a three-month PSA test schedule. If you look at my PSA chart, you’ll see that it’s been on a steady increase with a couple of really wild, inexplicable swings along the way.
Being the typical doctor-avoiding, “nothing’s wrong with me” 52-year old guy, I found myself in my doctor’s office in October 2010 to have pain in my hip checked out. She was diligent enough to take the exam one step further by checking out a few other things that had been overlooked for about three years, including a digital rectal exam (DRE).
She discovered a mass on my prostate and referred me to the local urologist and had my PSA run–it came back at 5.0 ng/ml.
Another DRE and a biopsy later, I learned on 11 November 2010 that 11 of 20 biopsy core samples came back as positive with prostate cancer. (Why my urologist turned my prostate into Swiss cheese with 20 samples is beyond me, but he did. Even with that many samples, there were no post-biopsy complications.)
Because my original reason for going to the doctor in the first place was pain in my hip, the urologist ordered a bone scan to see if the cancer had spread to the bones. It hadn’t.
I’m never one to rush into anything, so I don’t feel that I rushed my decision on my treatment options, but it was faster than I expected it to be.
For me, I wanted to give myself the greatest chance of survival by allowing myself to have as many back-up plans as possible. If I started with radiation, then surgery was pretty much ruled out if the radiation failed. Given my age, I opted for the robotic radical prostatectomy (RP) so that radiation could be my Plan B and hormone therapy my Plan C (along with a host of other options).
Once I decided to move forward with the RP, the thing that caused me the most anxiety was the selection of the surgeon. I agonized over that for what seemed like weeks. Once I made the choice, however, it was as though the weight of the world had been lifted from my shoulders.
The RP went as expected, taking about four hours to complete. The post-surgery pathology told me that my Gleason was now 3+4 and that my tumor was staged as pT2c N0 M0. There were negative margins and no lymph node involvement.
The one thing that I do remember–and was forewarned about–was the bloated feeling afterwards from the gas being used to inflate my innards to allow the surgeon to do his thing. It took a couple of days before I could pass gas, and when I did, it was a tremendous relief.
I was kept in the hospital an extra night because they noticed the lack of urine flowing into my catheter bag. They pumped my up with IV fluids to make sure that everything was connected and working as it should, and the next morning, there was so much urine in the bag that it was causing back pressure on my catheter tube. The pendulum swung in the complete opposite direction.
There was some localized pain at the incision points, but on the whole, it was manageable. I was up walking around the day after surgery, albeit slowly and tenderly initially, dragging my IV stand and catheter bag with me as I roamed the corridors of the hospital.
Three weeks after the surgery an infection set in and sent me back into the hospital for five nights. I left the hospital with two drainage tubes in my groin that stayed there for several weeks as the offending lymph fluid was drained from my body.
Initially, the incontinence was an issue for me, but I very quickly (within days of the catheter coming out) felt confident enough to move from the full-blown Depends to guards. Initially, I would go through several guards a day but, over time, I was able to eventually abandon them altogether (end of May/early June).
Early on, I could tell that my incontinence episodes increased in frequency later in the day when my body was tired. Very early on, the simple act of standing up from a chair caused me to leak, so I worked very hard on controlling my pelvic floor muscles. I didn’t mind that I looked like a 90-year old man standing up in slow motion, as long as I could do it without leaking.
Stress incontinence was also an issue, especially if I was standing when I sneezed or coughed. I would assume this goofy posture if I felt a sneeze coming on to try and prevent a leak. Stooping to get clothes out of the drier also caused minor leaking. But that, too, has improved over time. Today, nine years later, I’m essentially “dry.”
I knew that I would likely lose a nerve bundle going into the surgery given the size and location of my tumor on my prostate. I tried Cialis shortly after the surgery, but my eyes were going bonkers, and I didn’t think it was worth having vision problems just to have an erection. With the concurrence of my urologist, we stopped the Cialis (and haven’t tried it since).
It took the better part of two years for me to achieve some semblance of an erection without any chemical assistance. Some days, I couldn’t achieve an erection at all; many days, I could get into the 70%-80% range; and some really lucky days, I can be in the 90%+ range.
Orgasms initially were kind of wimpy, but over time have returned to the pre-surgery intensity for the most part. It’s taken a while to get used to the idea of dry orgasms.
When you tell someone that you have cancer, be ready for the relationship to change, most often in a direction that you didn’t anticipate. Some of those closest to me couldn’t handle the news and were the ones I could least depend on for emotional support, while some who were mere acquaintances prior to the diagnosis became my rocks.
I learned that I had to be the strong one in the relationship, even when I didn’t necessarily want to be. I also learned that I had to set the tone on how and when to talk about–shhhh–cancer. My approach was to talk about it openly, honestly, and with humor. I had to make fun of this somehow.
Being told you have cancer is emotional. (Duh!) But so is doing the research needed, selecting the treatment option, and simply dealing with the little setbacks and disappointments along the way.
At the beginning of this journey, the one question that I never really let take hold was “Why?” It was a question that I knew I would never be able to answer, and I wasn’t going to waste time, energy, or sanity trying to determine the answer. I got cancer. It sucks. Let’s deal with it.
Researching drove me nuts (and still does) because of all the differing options and opinions and studies and whatever else that’s out there to frustrate me.
Waiting also drove (and still drives) me nuts. On the one hand, it’s a good thing that prostate cancer seems to move at such a slow pace. It means we’re around for a longer time. But when you’re nervously waiting for the next result, time seems to be moving somewhere between a glacial and geological pace. It’s infuriating.
Some of the minor setbacks set me off emotionally. Silly little things like catheter or drainage tube hoses getting caught on something. My true nadir of the entire immediate post-surgery experience was when I was readmitted to the hospital with an infection and, one night, I had to get out of my hospital bed with two drainage bags attached to my groin and IVs in my arm, and I didn’t make it to the bathroom and just peed in my diaper till it overflowed down my leg onto the floor. I was so over the entire experience at that point. Just get me out of here!
Yes, the dreaded “R” word has crept into my vocabulary. As you’ve already read above, my PSA has been creeping upwards to its latest reading at 0.16 ng/ml. With so many different definitions of biochemical recurrence out there (one researcher noted there were 53 different definitions of BCR in 145 papers on post-prostatectomy recurrence!), I can pick one and say the cancer is back, and I can pick another and say that it isn’t. It’s nuts. Bottom line: I have PSA readings that are increasing when there shouldn’t be any PSA at all. In my mind, the cancer is coming/already back.
One of the most counter-intuitive things about prostate cancer is that, in certain circumstances, it can be okay to do nothing but continue to monitor. There’s a definite tendency towards, “I’ve got cancer in my body! I need to do something, now!!” mentality. I’ve fallen victim to it myself a few times, and there can be a tendency to over-treat a patient.
Given my post-surgery pathology, how long it took after the surgery for PSA to become detectable again, and the really long PSA doubling time that I have, I’m comfortable continuing to monitor the slow increase in my PSA without any intervening treatment right now. For someone else with different circumstances, the time to act may be now.
Of course, we don’t want this to get away from me but, on the other hand, I’ve had 4.5 years of good quality of life with no short or long-term side effects from salvage therapies. That’s important to me, too.
Perhaps conclusion is the wrong word for this summary. This journey won’t end until my ashes are scattered in the Pacific Ocean, whether the cause of my demise is prostate cancer or something else. And I think that that’s the most important lesson that I’ve learned through this. No matter if you’re “cured” or not, cancer never leaves your life.
I’ve also learned that I needed to be my own advocate, but that I also had to lean on a host of people throughout these past years. For their support, I am forever grateful.
Patience in the cancer game can be a virtue when it comes to bodily functions returning to some semblance of “normal.” My timeline will be different from each and every other man’s timeline out there; just know that improvement happens. You may never get back to 100%, but you will get better than you are today. Be patient.
Lastly, talking openly about cancer needs to happen. It was therapeutic for me, and I tried to educate others along the way by sharing my experience.
Knowledge is power.