Why don't doctors warn you about side effects of adt?

User

Posted 21 Oct 2026 at 01:27

I was never told about the side effects of adt treatment. My fault, maybe, but I didn't really know what questions to ask. So I was knocked out when I started crying, eventually continuously for more than 12 years when they finally acknowledged that there is a problem. The main consequence is that I no longer trust the medical profession or forgive them. Tension runs through every consultation that i have with them. It is my lived experience.

User

Posted 24 Oct 2026 at 08:10

Originally Posted by: Online Community Member

Would you feel better if you were told not to have it and you might die?

Good point, well made.

You either risk, the possible long term side effects of ADT:

• Cardiovascular Risks: Increased risk of heart disease, coronary events, sudden cardiac death, and stroke.

• Metabolic Changes: Accelerated risk of type-2 diabetes, insulin resistance, and unfavorable cholesterol or triglyceride shifts (metabolic syndrome).

• Bone Health (Osteoporosis): Rapid loss of bone mineral density, leading to a significantly higher risk of fractures and skeletal weakness.

• Body Composition Shifts: Substantial loss of muscle mass and strength coupled with an increase in abdominal and total body fat.

• Severe Fatigue & Vitality Loss: Profound, persistent exhaustion and low energy that can deeply impact daily quality of life.

• Sexual Dysfunction: Complete or near-complete loss of libido (sex drive), severe erectile dysfunction, and shrinking of the testicles or penis.

• Vasomotor & Endocrine Symptoms: Frequent, severe hot flushes, night sweats, and breast enlargement or tenderness (gynecomastia).

• Psychological & Cognitive Changes: Deep depression, anxiety, mood swings, irritability, and reported memory or concentration difficulties ("brain fog").

Or risk dying from the disease.

There is certainly a need for more help to be given to men struggling with prostate cancer and ADT.

https://www.abc.net.au/news/2025-07-14/prostate-cancer-androgen-deprivation-therapy-mental-health/105511892

Edited by member 24 Oct 2026 at 08:36 | Reason: Additional text

User

Posted 21 Oct 2026 at 14:11

Agree Adrian - not much discussion in my case either. Plenty of feedback on these pages though!

I would recommend the PCUK “ADT - The Lowdown” discussion, think it is about once a month and is very good.

Best wishes - stay positive

CeePee

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User

Posted 21 Oct 2026 at 11:26

Hello, mate.

Welcome to the forum.

Many of us feel that the side effects of our treatment weren't fully explained to us.

ADT can cause physical and psychological problems. Like the side effects of any prostate treatment, they can vary enormously from patient to patient.

Without knowing a bit about when you were diagnosed and what the diagnosis was, and what treatment you've had, it is difficult to comment further.

Mistakes were made in my treatment, which caused me to temporarily lose trust in the NHS, but I've come to learn that it's pointless carrying grudges.

Edited by member 21 Oct 2026 at 11:38 | Reason: Additional text

User

Posted 21 Oct 2026 at 14:11

Agree Adrian - not much discussion in my case either. Plenty of feedback on these pages though!

I would recommend the PCUK “ADT - The Lowdown” discussion, think it is about once a month and is very good.

Best wishes - stay positive

CeePee

User

Posted 21 Oct 2026 at 21:17

Doctors have insufficient time to explain in detail unfortunately but I was handed booklets that gave more information and how to get more support if needed. I would have thought this was usually the case?

Barry

User

Posted 23 Oct 2026 at 23:12

Maybe you could change the adt your on. We've all got lived experiences mate. Some of us are in serious trouble.

User

Posted 23 Oct 2026 at 23:14

Not given any information at all. Certainly no pamphlets. I still discover new side effects. They don't seem to be inclined to warn me about anything. I was warned, however, to not look up anything on the web due to there being a lot bad information out there.

Not told about:

I would have marital problems

Major sexual issues

Everlasting crying

Fatigue

Heart issues

Suicidal

Weakened bones (broken several)

Would have to give up work

Breasts

Etc, etc.

User

Posted 23 Oct 2026 at 23:32

Would you feel better if you were told not to have it and you might die?

User

Posted 23 Oct 2026 at 23:41

I really feel for you. I was terrified, and I think my husband as well, when he had his first crying episode. He self-trained with cognitive behavioral therapy, and that really helped. But nothing prepared either one of us and we didn't really understand what was going on also when things that he could balance in the past led to breakdowns. We've had a blessed time off from ADT for a while, but I am really worried about my husband's emotional well-being when he will inevitably return to this. He also loves exercise and extremely long walks and his work and when they throw in abi or enza it will become very difficult if he is fatigued. Hope Daro will be an option and easier and that it will work for a long time. Are you on Abi or Enza? Darolutamide is reported to not affect the brain so maybe could be easier. Maybe that could help at least with the fatigue and some brain effects?

User

Posted 24 Oct 2026 at 07:22

1. I rather suspect many doctors don't know. Unless you've done it yourself, you don't have that experience.

2. Clinic appointments are 10-20mins. It can't be done in even an hour.

I have run workshops on how to look after yourself while on ADT at a few hospitals - they take half a day.

I have done training for clinicians too - they are usually very surprised at the detail, hence why I say they mostly don't know.