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.