Anyone have severe penile shrinkage from Lupron and radiation?

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.

"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.

@jeffmarc

Excellent summary!

Just to add a few remarks about my own experience. I experienced some penile shrinkage as a result of starting Lupron (T < 3) and not using a vacuum pump or Cialis/Viagra to increase blood flow to my penis. My understanding is that penile shrinkage is directly related to prolonged lack of erections (nocturnal and daytime) such that the spongy penile erectile tissue undergoes atrophy over time. This can be ameliorated by regular stretching of the tissue using a vacuum pump, Cilais, and Trimix if needed. I regained some size when I discontinued Lupron and was put on Testosterone Replacement Therapy by my MO. I also began regularly using a vacuum pump, 5mg Cialis daily and Trimix a couple of times a week. With the Trimix I was able to achieve an erection sufficient for penetration.

I experienced fatigue, hot flashes, muscle loss, depression, loss of body hair and some joint pain while my testosterone (T) was near zero as a result of one year on Lupron and an additional year off Lupron but T didn't recover. As you point out, the symptoms are due to a lack of T, not the actual drug (ADT) itself. Symptoms rapidly disappeared when my T was restored.

As the original poster stated, the shrinkage is insult added to injury. It can be reversed to some degree in most cases from what I have read. All therapies for achieving an erection are becoming increasing ineffective for me. So, I am scheduled to have a penile implant placed later this month. Extensive reading on blogs (franktalk.org extensively discusses ED and treatments) and consultation with urologists indicates men can regain lost size over time with regular use of a penile implant. I will report on my anecdotal experience in the future. Good luck!