@sbd
I was 72½ years old when I was diagnosed with prostate cancer, Gleason 8, with metastases to several lymph nodes, the seminal vesicles, and the bladder neck. I was started on Abiraterone 1000 mg (taken on an empty stomach) in October 2022, along with Prednisolone 10 mg daily and Goserelin 10.8 mg every three months. All of these were discontinued after two years.
To answer your question about SpaceOAR or hydrogel — no, none were used in my case.
Tomotherapy: I underwent 20 fractions of Tomotherapy over about a month, from January to February 2023, when I was 73. Each fraction delivered a dose of 300 cGy.
Coverage area: PTV T60: Entire prostate gland and bilateral seminal vesicles with margins. PTV N54: Gross nodes – right internal and external iliac nodes with margins. PTV N45: Periprostatic, obturator, internal iliac, and external iliac nodes.
Side Effects and Aftermath:
It’s hard to say whether my long-term effects stem from Tomotherapy itself or from the two years of Abiraterone and Zoladex. A short-term issue, a few months after radiation was a bout of radiation proctitis, which resolved with medication and has not recurred.
Here’s what I’ve experienced:
Total loss of libido – persists to date.
Fatigue – almost constant, though it has marginally improved since stopping Abiraterone and Zoladex a year ago.
Hot flashes – especially pronounced for a few weeks after each Goserelin injection.
Abdominal fat gain: a 4–5 inch increase with noticeable muscle loss (weight unchanged, but I look quite obscene now!).
Gynecomastia - yes, that is embarrassing, but what the heck!
Loss of stamina – sometimes I feel exhausted even after something as simple as wiping myself post-bath.
Hip and lower back pain – Orthopaedic and Radiation Oncologists disagree on whether this is radiation-related.
Dry mouth – mostly gone now after stopping medication (boiled sweets helped when it occurred).
Incomplete voiding – particularly at night, though this too has improved over time.
Fluid retention – not an issue anymore.
None of these side effects is truly unbearable; they can be depressing, yes, but they ease gradually with time. The key is patience and acceptance. These treatments may test your resilience, but they also give us the gift of more time, time to live, to laugh, and to love.
Believe me, I’ve done exactly that. Over the past two years, I’ve learnt to live each day with more joy, more affection, and a healthy dose of mischief. I’ve learnt to love more things, and love them more deeply, whether tangible or imagined, real or dreamlike. I dream more. I forgive more.
All the best, keep smiling.
@samidh
Thanks a lot for your detailed response, sir. This is important and valuable information, as we prepare my father for Tomotherapy radiation. Tomotherapy doesn't seem to be a common choice in the western world.
It has been a highly emotional, obsessive researching weeks/months for the family, now we seem to have some level of acceptance, some direction.
Might bother you more at a later point in time. Meanwhile, as you said, we will learn to live each day with more joy, affection and with a smile! Take care.
PS: This is a great forum, of support, of inspiration! Keep fighting, keep smiling everyone!
God bless.