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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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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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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Listen to Jeff Marchi he s a doctor with 15 years experience: but won’t own up to it. I ve been following his posts for over three years. He s the man. He knows what he says is true. He s like a mohammmed Ali. Floats like a butterfly, spits out Truths like a bee. Lol

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Listen to Jeff Marchi he s a doctor with 15 years experience: but won’t own up to it. I ve been following his posts for over three years. He s the man. He knows what he says is true. He s like a mohammmed Ali. Floats like a butterfly, spits out Truths like a bee. Lol

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I spent 50 years in the computer field. 25 years writing programs, 25 years, running a computer consulting business. Not much medical training.

I’ve lived for 15 years with PC and for the last 4 years I have dedicated my time to finding out as much as I can. I’ve attending weekly advanced prostate cancer meetings and all the webinars available., I have acquired a lot of knowledge, and new things replace the old standards, so advice changes too.

I try to help. Sure wish I had this information 15 years ago.

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The information your putting out to others didn’t exist 15 yesrs ago. Your always up to date on current studies. Thanks for sharing.

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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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Profile picture for ecurb @ecurb

The information your putting out to others didn’t exist 15 yesrs ago. Your always up to date on current studies. Thanks for sharing.

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That’s the truth for sure. I had my prostate removed 19 years ago. I with I knew then, what I know now !

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(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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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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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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