By John

In June this year I chose to have my testicles surgically removed, as an alternative to a lifetime on Androgen Deprivation Therapy (ADT). In terms of my overall quality of life after orchidectomy, it is working better for me than taking the Zoladex hormone suppression drugs. On my initial diagnosis seven years ago I was so focused on loss of my erectile function that I felt ‘I would rather die than have my prostate removed.’ It is amazing to me that I am now at the stage where I voluntarily chose a treatment option that was nightmarish to me at the beginning.

My cancer had been rated Gleason grade 9 by the time I began conventional treatment in 2017. So I expected that cancer recurrence was likely, even though I had follow up radiation treatment and a year of ADT in 2018.

Indeed my PSA rose steadily during 2021 and I was referred back to Oncology for tests in January 2022. CT and bone scans only showed up activity in one lymph node at this stage. But I was now classified as Advanced Prostate Cancer – meaning it had spread beyond my prostate.

Lifetime ADT or Orchidectomy?

The recommended treatment plan for my advanced prostate cancer was ADT for life plus they offered radiation treatment to the pelvic lymph nodes. The radiation took place throughout May of 2022. For the ADT I asked about the option of Orchidectomy rather than lifetime drug induced castration. I wanted to limit the medication reliance and remove some potential long term drug related side effects.

I had a gut feeling that long term Zoladex etc wouldn’t be a good outcome for me. This was also based on my experience of a year of ADT with Zoladex in 2018. I know they say that the side effects are due solely to the loss of testosterone. But I feel that the drugs have a burden of their own and perhaps increase the severity of the side effects. It’s just my gut feeling, no science* to it, just what I felt comfortable with. At least it was one thing I could control.

Life on the other side of orchidectomy

My request for orchidectomy was approved so I had surgery on 7 June, 2022. Now 7 months after radiation treatment to my pelvic lymph nodes and 5 months after orchiectomy I am doing pretty well. PSA levels are undetectable (<0.05 ng/ml). I am experiencing much less distress than during my first round of ADT in 2018.

Energy levels and strength have been good so far. I knew what to expect from earlier ADT and that I needed to maintain exercise levels. If you let them slip and lose form it is very hard to resume and recover fitness and strength. I run 5km two or three times a week and cycle as well. I also do some weight training and have a punch bag. It helps to get some impact effect to the upper body bone structure to maintain bone density.

My mood is positive and I am happy with the orchiectomy choice so far. I haven’t had the same fragile emotions I had when on Zoladex and so far strength and energy levels are good. My motivation to maintain a healthy body weight and composition is strong. I am frustrated when I can’t exercise. Overall I feel better I think, but I realise it’s early days. I need to see where I am in another six months.

Sex is still of interest but motivation to initiate isn’t there. I’m still fascinated by it. I still appreciate feminine beauty and an attractive woman can still turn my head. My wife and I are comfortable with minimal sex but within a loving and demonstrative relationship. Natural aging has probably had some impact on things as well. I can still achieve orgasms and still find they are superior to previous erection-based orgasms.

Impact of losing testosterone – and mitigation plan

Here’s a list of the common side effects of ADT – whether you go the chemical or surgical castration route. I have added some notes on my experience having chosen surgery. Because I had the chemical castration in 2018 and surgical castration in 2022, I can compare the two experiences.

  • Loss of interest in sex (lowered libido) – yes but not total, still aware, still orgasmic, more relaxed
  • Erectile dysfunction – already there since surgery, not a focal point, still the odd stirring though
  • Hot flashes – yes, probably the same frequency and intensity as on Zoladex, but maybe less invasive
  • Loss of bone density/bone fractures – early days, trying to mitigate via exercise
  • Loss of muscle mass and physical strength – early days, trying to mitigate via exercise, energy and motivation good
  • Changes in blood lipids – ?
  • Insulin resistance – ?
  • Weight gain – I am combating this with regular exercise and careful diet
  • Mood swings – stable so far, no anguish, more relaxed, less emotional impact than Zoladex, less tearful, less personality change, don’t feel feminine, still feel manly, don’t feel depleted
  • Fatigue – not an issue so far
  • Growth of breast tissue (gynecomastia) – not an issue so far.

The big picture – advanced prostate cancer

My choices aren’t because of a desperate desire to cling to a life however depleted. I have had a great life and I am ok to go whenever my time is up. Yet I am in no hurry to accelerate that.

I am impacted by physical changes but don’t feel depleted in quality of life. Rather, the cancer has provided life experiences, insights and understandings that have actually enhanced my life.

I have no more treatment in the pipeline currently. I am back to 3 monthly PSA tests.

*Editor’s Note: There is some research backing what John describes as more of a gut feeling or hunch. Mohamed Adel Atta et al (2020) compared advanced prostate cancer patients who chose chemical or surgical castration and concluded that compared with drug-based ADT, “bilateral orchidectomy was associated with better HRQoL[health-related quality of life], better global health status, and better functional status.” They recommend re-looking at the treatment chosen by John as a potentially better option than a lifetime on drug-induced ADT.