ADT and prostate cancer
I went on ADT for six months in 2020 as part of my treatment for prostate cancer. The urologist didn't tell me that I would be experiencing hot flashes, mood swings, depression, fatigue, loss of libido, and shrunken testicles, nor how to deal with them. Now it has been just short of three years since the end of treatment and I'm still dealing with some of the symptoms. It's been quite a journey. I would like to help others by asking you to share your experiences with ADT; whether you are still on ADT, how long, and how it has affected your life.
I underwent the 6 month shot of Lupron in conjunction with 8 weeks of radiation some 5 years after surgery. I had hot flashes for almost 14 months. Also experienced serious weight gain and went from 159 to 185 lbs rather quickly. No one cautioned me about the need to be aware of diet concerns. If I was going to be put on lupron again ( god forbid ) I would follow a Mediterranean diet.
Yes on mood swings(tears) and loss of libido. emotionallyimpacted (tears) by events that prior to treatment did not effect me the same way Dennis(ProstateCancer.net TEAM)
Well I wish someone had given me the complete list of side effects. I have experienced all the ones everyone is mentioning. I wasn't offered any treatment other than radiation. A friend of mine said that during his consults for his treatment he felt like he was being sold a condo in Florida. He found a micro surgical option that gave him an additional 8 years with only one side effect. His cancer moved.
In December it will be my one year anniversary of no libido, no erections, or sexual relations with my wife.
I stopped my injections after #5 of 8 jabs. My oncologist said when I asked about stopping or pausing that it wasn't possible. I found out from searching the Mayo Clinic that you could pause and then restart at a later date. My urologist is now monitoring my psa scores. My last psa was 0.4.
I am still experiencing the whole list of side effects, the latest one being one of my testicles retracting.I may be missing something here. What was your diagnosis? For treatment of cancer that has not left the prostate 4 to 6 months of ADT is a standard treatment.
I went for a second opinion on ADT and was advised that since I was only Stage 2b with Gleason (3+4) 7, I did not need ADT. Unfortunately I did not take that advice.
Your testicles will shrink from ADT as they are not being used.
Libido is not needed for intercourse, but does supercharge it. Being sexually active while castrate requires intent and aggressive action. Taken with a sense of humor helps when the erection fails and you need to start over again. I was sexually active every day while on ADT.
My sense is that surgery is more often pushed because the person who makes the diagnosis is a surgeon. I opted for radiation as both have the same success rate, but radiation statistically has fewer side effects. I'm now almost 80 and fully functional.
Three years after end of ADT I still felt not fully recovered. I got the green light to go on TRT. This and exercise helped with stopping loss of muscle mass, but I was still not having spontaneous erections. Working with a pelvic floor therapist restored the spontaneous erections.
Guy B. Meredith, cancer survivor.
"Go not gentle into that good night." Dylan Thomas
I've been referred to Oregon Science and Health University (OHSU) Knight Cancer Institute and the endocrinology department to follow up on what appear to be lingering side effects from the Lupron.
I'm looking forward to finding some answers so I can share with others, but the whole process is going at the speed of a glacier and I'm really getting impatient.
The emotions seem to have tapered off a bit to where they are triggered by fewer things. Discussing watching others going through this journey seems to be one of the triggers. There seems to be much that is unfair in my mind.
The fatigue continues. I've decided to try an herbal supplement that I've researched pretty well. I had a blood series run before starting the supplement and will be getting quarterly tests along with the PSA to see whether the supplement actually does anything or is just a placebo.
Guy B. Meredith, moderator.I too went to OHSU Knight, and did 18 months of ADT after radiation, quit the ADT 6 months ago and still trying to lose the weigh, recover stamina, along with overcoming the other various issues. I am slowly gaining things back. Please let us know how the T-gel goes, and how or if it effects your PSA. Best wishes
As I mentioned, Dr. Julie Graef at Knight Cancer Institute gave me the green light at 3 years.
I've been on 25 mg of 1% gel per day (1/2 half recommended starting dose) since December 23, 2023 and so far the PSA has remained in the 0.177 to 0.361 range, which is considered "normal".
My libido at age 80 is pretty much like it was at age 30, sometimes more than I want. I'm using 5 mg tadalafil daily to work with either aging vessels or damage done to the vessels by the IMRT.
I'm sorting through mood swings to learn whether that is from needing to increase the testosterone dosage or from depression which would be handled separately. I'm still dealing with lack of energy and am trying to get on a good sleep schedule as probable cause at this point.
One of my concerns was whether I'd resumed nocturnal erections. The Men's Health in urology were not able to help and directed me to a pelvic floor therapist. Pelvic floor therapy feels intensely violating to my very inhibited self so I asked my wife to act as chaperon in case I might say or do something that could be misinterpreted.
After three sessions of perineal massage and home exercises I found myself with erections when I got up to go to the bathroom at night, solving that question.
Guy B. Meredith, "cured" cancer survivor.
"Do not go gentle into that good night." Dylon Thomas
I was on Eligard for six months starting in April 2021 (two 3-month injections) as part of my proton radiation treatment for prostate cancer. The Eligard remained in my system for an additional six months following the second (and final) injection.
I had read about the possible physical and mental side-effects of ADT and how they could be minimized with resistance training. So, I ramped up my resistance training (weight lifting) program prior to my first injection.
As a result, my side-effects were minimal - just minor “warm” flashes and muscle atrophy. I did have a loss of libido, but no ED, no mood swings, emotions, fatigue, brain fog, forgetfulness, depression, etc., things that are typically mentioned.
Not only didn’t I have weight gain, but through a change to a healthier diet together with the robust resistance-training program, I actually lost weight.
Now, 22 months after that 2nd (& final) Eligard injection, muscle mass and strength are back to pre-Eligard levels and I have no lingering after-effects. Life is back to normal.
Looking into it further you’ll find literature suggesting that if they avoid/minimize radiation to the penile bulb, that late ED is significantly reduced. We considered this during the planning for my proton radiation treatments. 
In January 2020 I got injected Eligard 45.0 mg but that injection was incomplete due to a nurse mistake so 3 months later I received my first dose of Lupron 22.5 mg and another 3 months, I got I received the second dose.
I also received 20 VTMAT 3 Gy.
My RO told me that du to the nurse’s mistake, the effects of my ADT could be MUCH longer(like 5 or 6 years or more).
So in October 2025, I still don’t have libido and NO erections.
But my PSA=<0.03 μg/L as of today.
In Canada, you can not sue.
And not enough problems, I am immunocompromised so I have IVIg45g every 4 weeks. At least I don’t have to pay $10,00 for each treatment.
I was on Casodex for three months before and during ten weeks of radiation, after radiation I was on Orgovyx for a year. I lost twenty five pounds during radiation from fasting before sessions, empty bowel full bladder, and the bland diet they put me on. I continue fasting in the mornings and changed my diet. During ADT I dropped another 8 pounds and tried to stay as active as possible. Fatigue set in by early afternoon. I think most of the weight I lost during ADT was muscle. Even though I bumped up my morning pushups from 120 to 150 . By month nine bone and joint pain was getting intolerable, especially my elbow and knees. I stopped doing pushups but continued my long walks with our dog. After ending ADT I have to say Orgovyx was as advertised, after three months my T levels were back to normal and all systems were working again (you know what I mean). Eight months off of ADT I feel I've lost some energy again, not enough to slow me down as I just finish my second pushup challenge this year, this one for St. Jude, but I have noticed it. I don't know if this is a side effect of ADT or age. I pray my cancer never returns, but if it does going back on ADT for me will have to be a last resort. It was hard to embrace that suck .
It's interesting to hear your and 's comments about weight loss. Hormone treatment often causes weight gain from fat in the breasts and belly. My weight remained the same even as my belly grew. I guess maybe fat in my body just moved to the belly.
What type of dog do you have? We have a 55 lb Australian Shepherd, Jazz, who is over the top with energy and short on manners. Walking Jazz is major core exercise with the abs working full time.
Guy B. Meredith, moderator.
I have low T and all of these symptoms but my doctor won't prescribe testosterone due to me waiting for a biopsy to see if I have prostate cancer. It's gotten so bad over the past year of waiting for various tests that I only have to shave once a week and my face feels like I'm 16 again. Am thinking of bypassing him and going to one of the online sites that will prescribe testosterone such as RO and others. I've already decided the ONLY treatment I will consider is Proton or ultrasound and if I'm not a candidate for either at least I can "go out with a bang" in more ways than one.
