Anyone have severe penile shrinkage from Lupron and radiation?

(I didn’t have that experience.)

Regarding your current situation, it’s helpful for you to know what specific factors might be causing your issues and give you an idea of how to help reverse this unfortunate side effect?
> Are you still on ADT?
> when were your radiation treatments?
> What type and how much radiation did you get?
> Did they radiate your penile bulb?
> What was your full bladder/empty bowel routine?
> Did you use a rectal spacer?
======================

A doctor will tell you everything he/she thinks you need to know about having successful prostate cancer treatments, but not everything you’d want to know (especially if it involves quality of life). Beyond that, it’s up to the patient to ask the questions. This is about self-advocacy and shared decision-making.

The side-effects of both radiation treatments and ADT (when compared to surgery) are well-known. (In fact, those differences comparing radiation+ADT to surgery - both from what we had discussed and from what I had read - are what led me to choose radiation+ADT.)

My medical oncologist informed me well in advance of my first Eligard injection of the likely & potential side-effects of ADT, and recommended that I engage in robust resistance-training exercises to minimize/avoid them. She also advised that since ADT would cause low-libido, to continue “doing it anyway” even though I would feel like doing it, and that it is sometimes a “use it or lose it” scenario.

@brianjarvis

I received absolutely no warning of side effects from Lupron, nor did I get any guidance when side effects started. I was totally on my own with my best sources being this web site and friends suffering from the same side effects.

I didn’t experience what you describe either. Please describe your treatment from start to finish. When did you start ADT? When did you start radiation? And what type and how many treatments? When did you stop ADT or are you still doing it?

My experience was Firmagon ADT two months before 5 SBRT proton radiation treatments. And I stopped the Firmagon after 5 months. Firmagon half life is 55 days so my sexuality is just starting to return. Along the way I have used a penile pump along with low dose Viagra daily to maintain sexual health. Exercise twice a week weight lifting and cardio for 1.5 hours. And am happy to say that it worked! Sex this morning was a sweet reward for 8 difficult months. It is likely not too late for you to engage in penile restoration therapies. First thing that I would recommend is going to YouTube and look for videos by Doctor John Mulhall of Sloan Kettering and watch them. He is likely the single most knowledgeable person regarding what you are going through

@pesquallie A real FAILURE of the medical community. And the so called Centers of Excellence don’t do well with this either. I personally think that it is a “What they don’t know won’t hurt them” mentality. But ADT can be managed in ways that are far less impactful than just giving a patient a 6 month shot and kicking them out the door

@pesquallie That’s unfortunate.

When I was diagnosed with prostate cancer, my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, everything that they were going to do to me was first fully explained; after understanding it, I either agreed to it or it didn’t happen.

As it turned out, I selected my own medical team - a radiation oncologist at one hospital and a medical oncologist at another hospital. We worked together to get answers to the questions that I needed to ask. But, if I hadn’t taken charge and pushed it myself (and done my own research), I wouldn’t have learned half of what I did.

Your issues are more than likely related to the ADT and not the radiation; are you still on ADT?

"I selected my own medical team - a radiation oncologist at one hospital and a medical oncologist at another hospital. We worked together to get answers to the questions that I needed to ask. But, if I hadn’t taken charge and pushed it myself (and done my own research), I wouldn’t have learned half of what I did."

You were lucky to have had the mental clarity to make the different choices as you did.

For me, the shock of being diagnosed with cancer and my being a non-medical worker, I trusted the doctors and followed their advice. I never thought to research as you did. I would not have had the knowledge to challenge the doctor's advice or attempt to see if the doctor was failing to advise me of anything like the side effects from therapy.

Based on available information, the penile shrinkage is likely irreversible.

Too bad that patients are not warned of this possible side effect before choosing surgery versus Lupron, etc.

Yes, Androgen Deprivation Therapy (ADT) can cause penis shrinkage. By suppressing testosterone, the therapy leads to the structural atrophy of erectile tissue and reduced blood flow. While testicle and penis size reduction is an expected side effect, it often reverses once ADT is completed

Some more information your doctor may not have covered

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk fast on a track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list. I wear a Embrlabs.com Wave 2 device. It can reduce the hot flashes during the day and at night pretty much stops them completely. Megestrol has worked for some people.

I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. Be aware that because you are on ADT you will find it very difficult to lose weight. That is one of the problems when you have a very little testosterone, you really have to work for it. Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss.

@brianjarvis

Could not tolerate the Lupron and stopped after 4 months.

@pesquallie Yes, the side-effects can be tough. I only experienced mild warm flashes, muscle atrophy, and loss of libido.

Did you engage in a vigorous resistance-training exercise program?
> Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch

> A paper on The Benefits of Exercise During Hormone Therapy: https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+2015_PCRI.pdf

> A study about the benefits of exercise to counteract the adverse effects of ADT: (They describe a good resistance-training program): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

One other thing I will add. Jeff mentioned weight gain. And it happens a bunch at the belly line, groin area. That alone can give someone the false perception of penile shortening. If you have gained significant weight, that could be part of the equation for you. I do much as Jeff does. I saw that 3 months in, I had gained 10 pounds. So I usually eat a light breakfast, skip lunch, and a normal dinner. I hit the gym, and had a professional trainer assemble a resistance weight program along with some cardiovascular work too. I have nearly doubled my lifted weights in every category. I have taken all the weight gained off. And feel ENORMOUSLY better.