My Journey - Hope it helps Others

Hi Fellow Men,

I had this post up in the Advanced section and it has been suggested that I share it here.

My diagnosis:

Age: 59 - I am fit and very active. 

The original diagnosis was Gleeson 8 - Stage 3a

My Journey:

During the first period before obtaining a date and agreeing to have surgery, I felt like a Deer in the Head Lights, not understanding what to expect, now one suggesting that I join forums like this. Whilst my wife panicked and developed severe anxiety requiring medical support, I managed to control my emotions and not feel scared or afraid of what I was told. I opted to immediately share my prognosis with my kids and friends, Telling my kids was the hardest thing to do, resulting in the first and last time I shed a tear about my situation, I cannot live a lie and fortunately, my kids were already at a mature age.

This was followed by an immense amount of research and looking at life expectancy and then deciding on a strategy how to beat it. I decided to take the fight on similar to a Boxer. My reason for this analogy is that at the end of the day, I am the only one that is in the rink with cancer and I think about it almost all the time, finding myself constantly researching and reading up on PC wanting to understand more. 

My attitude was and still is "I do not have Cancer, Cancer has me". I will prepare like a professional boxer and study my opponent, get physically and mentally fit and follow a healthy diet. I have come to terms that Prostate cancer is not a death sentence (This was my initial thought), and now I understand that it is more of an adjustment to the quality of life (I may still not really understand what lies ahead). At this stage, I am extremely fortunate that I do not have any urinary incontinence. ED is another topic altogether. Hormonal Therapy has done what it was supposed to, I am hoping that this will change once the medication wears off. Only time will tell. 

My timeline and insights:

• In October 2021 my PSA Prior was 5.5 - this climbed from 2.3 about 18 months prior. I had no symptoms and had a routine medical check-up
• I was officially Diagnosed in December 2022 with Gleeson 8 Stage 3a PC after a second round of Biopsies. In the first round, the Urologist took two samples that did not align with the MRI and PET Scans. There was confusion on my first Urologists's face and it was only after my wife insisted that he repeated the biopsies and took more samples. The second Biopsy 10 days later confirmed that my situation was a lot more serious.
• I was not confident in my first Urologist and thank goodness I opted to change. I needed a surgeon that was decisive and had a good success rate and specialized in this field. I was immediately booked in for a Radical Prostatectomy Robotic surgery on the 10th of January 2022 
  • The Pathology report showed the following
    • Prostatic Adenocarcinoma, Gleason score 4+4=8 with Ductal component of approximately 30%
    • Lymphovascular Invasion, Intraductal Carcinoma, and Extraprostatic extension were all present
  • My Urologist prescribed Viagra 100mg to be used every 2nd day before surgery and then continue after surgery
  • 3 Months after surgery my was PSA 0.06 
  • 6 Months later my PSA was 0.16. 
  • My Urologist immediately referred me to a highly qualified Oncologist,
  • Another PET scan was done, fortunately with no sign of Metastasis 
  • My Oncologist was now in charge and decided an aggressive approach was required as I was deemed young and fit and felt that there was a high likelihood of microscopic cancer cells in my prostate bed or even in the surrounding lymph nodes
• I Started Salvage Radiation and Hormonal Therapy on the 3rd of August 2022
  • Salvage Radiation - 35 sessions. Prostate bed 70 Gray + Nodes at 52 Gray.
  • Hormonal Therapy - 6 Months course was prescribed. I opted for 2 x 3-month injections (Lucerin Depot).
  • I have been struggling to control my body temperature. Felt like I had a fever without the temperature. The hot and cold flushes prevented me from having a good night’s sleep, waking up every 20 minutes at first and eventually settling down to every 2 hours after taking Venlafaxine as prescribed by my Oncologist. I found myself sweating like crazy and the very next minute freezing my butt off, really horrible feelings. Some days I felt like stopping the Hormonal Treatment, I knew it was a short-term sacrifice for a potential long-term gain. After my second injection, I started feeling lethargic despite running and keeping active, with zero alcohol and eating healthy. Sleeping on average 3 to 5 hours a night according to my Garmin watch my Body Battery was down and my sleep quality was compromised.

• First blood test after Radiation was on the 13th of December:
  • Testosterone level at 1ng/dL
  • PSA was down to an acceptable level at 0.016 which is 10x lower after this treatment

My next appointment with my Oncologist was on 14 March 2023. The results were really great with my PSA almost undetectable at 0.009, unfortunately my Testosterone had dropped even further down for 1.0nmol/l to  0.8nmol/l. Whilst my Oncologist was really happy about my Testosterone level, I am not. Considering that levels between 11 and 40nmol/l is normal for a man. 

My next follow is in 6 Months time with no further Hormonal Treatment required - this is a huge win for me!

This is a waiting game that can consume a lot of our time, so it is my objective to let my Medical team worry about me and I will focus on those things in my control.

All of the best to fellow PC men.

Kind Regards