Starting Hormone Therapy

Posted by aby81 @aby81, Jun 27 9:52am

Hello, I am new to this topic. My husband (age 61) was diagnosed with Advanced metastatic prostate cancer (Gleason 4+4, chest bone metastasis). Last month he underwent radical prostatectomy. Yesterday, doctor contacted us with biopsy results. Informing us that some of the removed lymph nodes are malignant and suggesting 3 years of hormone therapy and 3 months after combining with radiotherapy. We are not doing fine, scared. Not to mention that we are already battling thyroid cancer for almost 4 years (regular check-ups every 6 months watch and wait). I need someone to tell me please, how to deal with the hormone therapy? What is your experience? What helped? What should I get him? We are both working full time and he is very much independent. It will change? I have so many questions. Please, could someone share their experience with me? Thank you.

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Profile picture for jeff Marchi @jeffmarc

I’ve had PC for 15 years and been on hormone therapy (ADT) for eight years. It’s never really changed my life, There are some things I have to do to offset it, But it allows me to stay alive.

Your husband’s case could be very treatable. I know many people with Gleason 8 that have lived decades without problems. Getting the proper treatment, which in this case almost always includes ADT, stops the cancer from growing and shrinks it so it can be treated more easily. If you work with a center of excellence and/or a Genito Urinary Oncologist You will get the best treatment. In this case, I would recommend a second opinion from somewhere else because this is a serious case that needs to be treated properly. Get a second opinion to make sure what you are hearing is confirmed by other doctors.

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
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 on the 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 as 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.

When I first started ADT I got a lot of strong hot flashes. Some people get none at all. Others only have a few hot flashes and they are very minor. If you have a problem with hot flashes, you can come here and we can give you help to resolve them.

According to a doctor that spoke to a recent webinar, all people on ADT 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.

Isn’t thyroid cancer resolved by removing the thyroid and taking a once a day pill? My wife had problems with her thyroid and they told her that might be something she would have to do. Just asking for possible future issues.

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Hello Jeff, Thank you for your advice. I hope my husband will cope with the hormone therapy and he will be responsive. Yesterday, we got our post operation results from the biopsy and the Gleason score is now 5+4. We caught it late. He is depressed and is giving up. We are confused about why they performed the radical prostatectomy if he could have avoid it and start directly with the ADT. We will find out next week at the appointment with the oncologist.
Regarding the thyroid cancer, it depends about the type and stage. Unfortunately also here we got it late and by removing it it was not solved.
I wish you all the best.

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Profile picture for johnernest @johnernest

I have been on hormone therapy for almost 10 months now, I was diagnosed late last year with Gleason 9, with metastasis to one lymph node and pelvis. My cancer growths have all stopped and greatly diminished from the hormone therapy. However, there are side effects: hot flashes, joint pains, and fatigue. The fatigue is the worst side effect, but if you stay active and lift weights, the effects of the fatigue are not too bad. For example, if you are sitting around, maybe watching television, all the sudden I will get really tired and want to sleep, but if you get up and walk around a bit, the fatigue dissipates very quickly, If you can, it is very important to keep your muscle strong as the lack of testosterone will cause rapid muscle weakness and joint problems, etc. I workout 4 days per week, and so far I have maintained my strength and energy. Hope this helps explain it, while it is just my experience. Everyone reacts different. My thoughts are with you and your husband and hope for your recovery.

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Hi John, many thanks for your advice and thoughts. I will try to convince him to start working out, my husband never did. He is feeling very down and still recuperating after the operation. On the top of it we got our post operation biopsy results and it is Gleason 9 with metastasis to four lymph nodes and pelvis. We need to combine ADT also with radiotherapy due to the chest bones metastasis. This is difficult.
I wish you all the best, good luck with everything!

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Profile picture for johndavis60 @johndavis60

Hi @aby81 ,
I’m 50 and have Gleason 4+5. Just had prostatectomy on 5/22/25 and will have my 1st meeting with Genito Urinary Oncologist in mid July, where I’m sure I will be prescribed a couple ADT drugs for 3 years. Just met with radiation doctor and will start radiation in September. I can attest to the wealth of support and information from Jeff and others on this forum.
Good luck with everything! 🙂

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Hi John, thank you for sharing. My husband had prostatectomy on 5/21/2025. How is your recovering? He is complaining about fatigue, pain in the urinary tract and has severe incontinence. Started with kegel exercises last week and hopefully he will have some improvement. He goes to work daily and is very anxious about the meeting with oncologist scheduled next week. I hope you for your recovery and all the best with everything to you too.

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I've been oh hormone therapy(Eligard) for 9 months. Lots of "manapause" and my weight has gone from 165-180. I walk everyday and try to get in a run about twice a week. I also eat healthy so I'm not real sure why I've gained 15. My testosterone is VERY low. Also, tell your husband to try and do resistance training for the muscles. Besides that I can't think of anything else. Oh, sleep can be affected too. BEST OF LUCK TO YOU GUYS!!!!!

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Profile picture for brianjarvis @brianjarvis

(I was on hormone therapy for my 4+3=7. By following these recommendations, my ADT side-effects were minimal.)

Regarding minimizing ADT side-effects —>

Here’s a PCRI video discussing this topic: https://m.youtube.com/watch?v=YE61HSAsFb0

Here’s a clinical trial paper with details about the benefits of resistance-training exercise as it relates to ADT side-effects: https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

If he starts exercises before starting ADT, as those experts point out he’ll do better while on ADT.

Good luck!

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Thank you for sharing, I will watch the video and read the paper.
All the best to you!

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Profile picture for dpayton @dpayton

I've been oh hormone therapy(Eligard) for 9 months. Lots of "manapause" and my weight has gone from 165-180. I walk everyday and try to get in a run about twice a week. I also eat healthy so I'm not real sure why I've gained 15. My testosterone is VERY low. Also, tell your husband to try and do resistance training for the muscles. Besides that I can't think of anything else. Oh, sleep can be affected too. BEST OF LUCK TO YOU GUYS!!!!!

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Eight years on ADT and my weight has been steady at 189 for 20+ years. I get on a scale every day and if I gain a pound I might skip lunch, and I eat less at dinner. Sure, during the holidays I may gain two or 3 pounds but it doesn’t take me more than a couple of weeks to take it off. Pick a weight and try and target it by eating right.

I think the thing that gets people to gain weight is that they have munchies and don’t resist it. If I get munchies, I’ll eat a few pistachios or a piece of fruit an apple or orange (a few grapes these days). That doesn’t seem to put on weight if you don’t overdo it.

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Profile picture for scottbeammeup @scottbeammeup

I will add two things in addition to what the others have said:

If your husband *DOES* get the depression side effect, take care of it sooner rather than later. I waited too long out of male pride and suffered much more than I had to.

If maintaining a sex life is something important to you, see a sexual health doctor. Obviously, it's not as important as eliminating the cancer but hormone therapy will generally lower or eliminate libido. Mine put me on two years of low-dose Sildenafil (Viagra) to keep blood flow and prevent atrophy (use it or lose it). He'll also want to induce erections at least 3x a week since the normal ones that occur when men are sleeping will go away.

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Hi, thank you for your advice. Unfortunately the depression and sleep deprivation is already present and we did not even started with the ADT. The male pride makes it difficult and impossible suggesting to ask doctor for a help.
Good luck to you

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Profile picture for aby81 @aby81

Hi, thank you for your advice. Unfortunately the depression and sleep deprivation is already present and we did not even started with the ADT. The male pride makes it difficult and impossible suggesting to ask doctor for a help.
Good luck to you

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Quite a few people have the same depression, problem because of diagnosis and treatment. ADT can make depression worse.

People have reported that Wellbutrin really works well for some people in another person reported they’re taking Prozac and it really helps. People said once they started the pills. They had a whole new outlook on life.

Talk to a doctor, Getting that medication can make life A lot more than bearable.

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Profile picture for jime51 @jime51

Thank you for joining this forum, especially on behalf of your husband. My wife has been my hero through doctor appointments, radiation treatments, and hormone therapy, along with my trying to change diet. I was diagnosed at Thanksgiving with Gleason seven (4+3) and regional risk with spread to two lymph nodes near the prostate. I have not had surgery, but have been taking Orgovyx for six months and am two months past 44 weekday radiation treatments that included concentration on the prostate and across the pelvis, generally. You have a right to be afraid; cancer is a scary word no matter which label is placed in front of it. I highly recommend if your husband will be on hormone therapy while he is taking radiation, that he talk with his supervisor about moving to part-time work or having the flexibility to take extra time off. I’m retired, but a friend who is 67 was taking radiation at the same time that I was, and while working full-time was completely miserable. He arranged to take an extra day or some extra time off. I suppose I was one of those special cases in that I experienced Every side effect that was listed on the Orgovyx manufacturer website including hot flashes, fatigue, loss of libido, ED, weight gain, and diarrhea. I agree with everyone here that exercise helps combat fatigue, and I try to exercise every weekday, but no matter what I do it’s as though I’m a car with all flat tires in the afternoons. If your husband is not accustomed to resistance training, he might do as I did and meet with a personal trainer for a few sessions to set up a program of upper and lower body exercises. he may not be old enough yet for silver sneakers through Medicare, but I believe planet fitness offers fees as low as $10 a month for basic access to fitness equipment. My energy has improved a bit starting several weeks after completing all radiation treatments. My PSA has gone from 6.4 last August to 0.01 this May. Prayer for clear direction going forward and excellent outcomes!

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Hi Jime, thank you for your advice and prayer. Sorry to hear that you experienced each side effect while on the Orgovyx. We are going to find out next week when we will start. My husband is self employed, will see how it goes. He is already experiencing fatigue and depression and we did not even started. It will be also difficult to convince him to start to work out as he never did. His life style is work, work and work and enjoying good food.
I wish you and your wife all the best.

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Profile picture for dpayton @dpayton

I've been oh hormone therapy(Eligard) for 9 months. Lots of "manapause" and my weight has gone from 165-180. I walk everyday and try to get in a run about twice a week. I also eat healthy so I'm not real sure why I've gained 15. My testosterone is VERY low. Also, tell your husband to try and do resistance training for the muscles. Besides that I can't think of anything else. Oh, sleep can be affected too. BEST OF LUCK TO YOU GUYS!!!!!

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Thank you for your advice. I wish you all the best.

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