My Cancer Journey

Intro

This blog is a collection of posts related to prostate cancer, beginning with checkups, the diagnosis, subsequent surgery, and the ongoing recovery. Although your urologist will give you some reading materials to help guide you through the experience, there were many things I wish I’d known about the surgery and recovery beforehand.

Hopefully I can help you navigate the twists and turns involved in this journey so that you can be prepared for every stage of your treatment.

Monitoring

Starting in my early fifties my family doctor included a check for PSA in my blood work that accompanied regular checkups. A PSA test is a blood test used to screen for prostate cancer. The test measures the amount of prostate-specific antigen (PSA) in your blood.

When my PSA levels began to climb, I was referred to a urologist who took over and scheduled regular prostate exams.

This continued for roughly ten years as my PSA levels continued to climb. Roughly every second year a biopsy was done. This involves taking a dozen or so samples using a spring like device that impacts the prostate gland and removes a tiny amount of tissue which is analyzed. The problem with this is that none of the samples collected may be from an area of concern that could be cancerous. Also, not all parts of the prostate can be targeted for sample collection, for example the prostate gland has one side that is inaccessible because it rests against the bowel wall. One of these biopsies had a very small area that concerned my specialist and he began to keep a close eye on it.

In January 2022 my urologist informed me that my PSA readings were high enough to be concerning and suggested another biopsy, or as an alternative, a CT scan which would be scheduled at a hospital. I chose the CT scan and continue to be happy I did. It results in a complete image of the gland and in my case, a visible area showing a cancerous growth. I would recommend requesting a CT scan if you've already had a few biopsies.

Diagnosis

I can’t say I was surprised when the diagnosis came back that I definitely had prostate cancer. It seemed that this was the direction things were headed over the decade or so of monitoring, biopsies, and the eventual scan.

Still, it’s a gut punch to hear it.

If you’re going to get cancer though, prostate cancer would be the kind to have since its one of the slowest growing types. As long as detection is early, the prognosis is generally very good.

In my case there are three treatment options:

  1. Radiation

    The problem with this is that if your prostate cancer returns later on you can’t then do option 2. You would have to do chemotherapy. While not as invasive as surgery, there are still side effects.

  2. Radical Prostatectomy and Bilateral Pelvic Lymphadenectomy

    This involves the complete removal of the prostate gland as well as lymph nodes close to the prostate gland. I chose this option as it was recommended by my urologist and I liked the idea of having the cancerous growth gone! My urologist warned me though that the recovery is at least three months (no full golf swings or strenuous activity) and the first 2-3 weeks are especially tough having a catheter for two weeks is standard procedure. Expect to stay in the hospital for 4-5 days before being discharged. This is a major operation, I was in the operating room for roughly 3.5 hours and afterwards you’ll have internal stitches, external staples as well as a drain for fluid that collects around the incision.

  3. Robotic-assisted Radical Proctectomy

    This sounded good but was not available in Manitoba as of June 2022.

My follow up appointment where these options were presented to me was in early April. I was told that a surgery date would probably be in August or September. I remember thinking that it could be longer than that if another wave of Covid came and surgeries started getting cancelled again!

In the first week of June, I got a package in the mail indicating my surgery was scheduled for June 29. I felt relieved that I had a date soon enough that Covid might not have time to build up again, but it made for a very short golf season as our spring was so cold and wet with flooding that most courses didn’t open until the second week in May.

Still sooner was definitely better than later!

Things You'll Need

None of the pamphlets I got mentioned what you’ll need when you go home after your surgery. So, before your surgery date you'll want to round up the following items.

I would recommend picking up adult diapers. This is because there will be oozing from around the catheter tube which includes some blood that has pooled following surgery. These saved ruining many pairs of underwear and pants! If you are really lucky you won’t have this and the diapers can be returned.

I would also get absorbent pads for when the catheter is removed. Many men have some degree of incontinence at this stage. What research I did said that this usually rights itself eventually but at the beginning you will definitely want some protection for your clothes.

To clean your catheter bag, you’ll need a squirt bottle (or a syringe) something like the one shown. It needs to have a spout small enough to shoot the cleaning liquid (vinegar and water) into the catheter tube. I got this one at a dollar store.

Here's a link to a video that goes through the general care of your urinary drainage bag. The cleaning instructions are at approximately the 12:00 minute mark. My bag's instructions were to use vinegar and water rather than bleach as in the video.

Adult Diaper
Adult diapers
Adult Diaper
Absorbent pads
Plastic bottle
Plastic bottle

Timeline

June 29, 2022

Surgery day, arrived at hospital at 6:30 a.m.

First week

Discharged from hospital after 4 days

Very tired & very little energy

It took a few days to get the hang of emptying and cleaning the catheter bags.

I took home a prescription for anti-coagulant injections that involve giving myself a needle adjacent to the belly button for 30 days. The novelty of this wears off quickly!

Second week

Felt a little better

Energy began to slighly improve

Had trouble changing the dressing for my drain and was told to go the emergency ward. Eight hours later when at home I noticed that there was no urine in the urinary bag at all. Wasn't feeling very good, called an ambulance, 90 minutes later it still had not come! (EPIC FAIL City of Winnipeg).
I got a neighbour to drive me to the emergency ward again and arrived there at 8:00 p.m.
Got home this time at 3:30 am. The doctor there told me that I probably got dehydated while waiting in the first emergency ward but all was functioning properly now.

Third week

I was supposed to get the drain removed after 7 days but lymph was still bypassing the drain itself and soaking the dressing covering it. The removal is postponed for a few days. The drain and catheter are equally uncomfortable at this point.

I looked forward to getting the drain, catheter, and staples removed at the 14 day mark.

HUGE DISSAPOINTMENT! My surgeon wanted to just remove the drain and staples, then after 5 additional days the catheter. He felt that doing all three at the same time would be too much, which I'm sure was true. The next 5 days passed by very slowly but at last I was able to have a shower instead of a sponge bath now that the staples were gone.

FINALLY, after 19 days the catheter was out!
When leaving the clinic I was told that if I hadn't urinated by 4-6 hours I would need to go to the emergency ward.
This was not an issue though, urine flowed non-stop at first with seemingly no control possible! (This is fairly common)
At least I didn't have to return to the emergency ward again!

Fourth week

Still fairly tired, needed a nap most days.

Last self injection, very happy to be done with these!

Weeks 5-8 (August)

I've regained about 75% of my energy

Began pelvic floor physiotherapy sessions

Was starting to have more bladder control. In the mornings I notice that some urine has been retained and the pad is somewhat lighter after sleeping.

I'm now allowed to lift up our granddaughter. (There should be no lifting any more than 10 lbs. for 4-6 weeks)

Weeks 9-12 (September)

Started chipping and putting halfway through the month.

By the end of the month, I'm out on the course playing 9 holes with irons and wedges, but no driver or fairway woods yet. I wasn't having any abdominal discomfort during or after playing. (The recommended recovery period is at least 3 months). It feels so good to be playing again.

At my first follow up appointment I was informed that my PSA is negligable now, which means that there is no evidence of any cancer remaining.

Weeks 13-16 (October)

Played 18 holes with a full bag of clubs, still no issues with abdononal discomfort.

I've regained about 90%-95% of my energy now.

I began substituting again, half days initially, but managed full days by the end of the month.

The incontinence fluctuated from good to not so good days. My physiotherapist says that this is common and if I consistently do the exercises I'll eventually get close to where I was before the surgery. This takes 6-8 months.

Weeks 17-21 (November)

Bladder control is slowly improving. I'm mastering quickly changing pads when playing golf, working, or most other activities.