6 months or 18-24 months ADT with salvage Radiotherapy

I wish you the best outcome with your treatment.

All the very best, rad62. My perception (quite possibly wrong) is that Europe and Australia have sometimes been ahead of the US in offering innovative diagnostic tools and treatments, mainly because of the FDA approval process.

@samidh
Hi, could you share more info on Tomotherapy?
Did they use spaceoar or hydrogel? How many days and total dose? What was the coverage area? Short and long term side effects? This would really help.

@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.

Hi, thank you for sharing. I was wondering if you’re in remission and if your PSA levels are still undetectable thanks.

@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.

My circumstances were similar and they recommended 24 months of ADT. I was undetectable throughout and stopped at 18 months. In retrospect, I wish I had stopped at 6 months.

Hi, Don't have all of the symptoms, treatment & conditions that you describe but thought I'd remark on the ADT (in my case, a 2 yr regime of Lupron, which I cut off at 18 mos instead of the 24 month term). (No Tomotherapy either). Gleason 7 (3&4), Prostatectomy at 72, 38 days of Photon radiation last Nov '24, yielding PSA of 0.064 and 6% Testosterone.
Many of the symptoms you described are the same as mine and then some.
My oncologist & radiologist were not entirely honest with me about being able to rebound from the effects of this dreaded therapy. Yeah, I know, Count my Blessings and I do!
But I was led to believe that I "could" realistically start to REBOUND a matter of weeks beyond my early termination of the Lupron. Nope, not even close. From this wonderful online support testimonial, I have learned that many of you have described lengthy timelines or in some cases, never being able to rid these debilitating body dysfunction, I am one of them. Forget about the bedroom for anything other than sleeping - Gone. Horrible, constant sweating Heat Attacks causing clothing to be a curse one minute and nothing to mitigate them. Loss of muscle mass that I have attempted to overcome with exercise but is nearly laughable while my GP warns me to be careful as I could injure myself given my depleted T levels for the last 2 + years.
For me, I am thankful that all of the current testing indicates low risk of cancer currently, but offset by NOT having much of a life. Food doesn't even taste good anymore so great for a weight loss program. My cure appears to be in place and I'm thankful. Finding "Life" again is a constant battle. Hope you find your happiness as many of these former patients seem to be chronicling on this 'blog'. Thank you, rlm

I had salvage radiation and six months Lupron in 2019. My testosterone came back to 400 in three months, but my cancer came back in two years. I then had five radiation treatments to a lesion on my sacrum and three years on Lupron and Abiraterone. My PSA has remained undetectable for over four years, but my testosterone is only slowly returning in the one year that I have been off ADT. We are all unique and nobody knows how our bodies will react, but your doctor is probably more interested in stopping the spread of your cancer than your testosterone levels and the difficulties no or low testosterone brings. I am 74 and otherwise healthy, eat healthy and exercise daily for at least an hour.

@trchar
My PSA level in Oct last, when I stopped Abiraterone and Zoladex (and having undergone tomotherapy in Jan-Feb 2023), was 0.02, which was the level for several months while I was under the drugs. It never dropped down to "undetectable". This kept gradually increasing after I stopped the drugs (I get the PSA checked from the same lab) to .03, .04 and last week it was again .03. My Onco, during my 3-monthly review, perfunctorily sees the PSA report and scribbles, "Review after 3 months".