1. < Prostate Cancer

Benefits of staying on hormone treatment past recommended 24 months

Posted by tom57 @tom57, May 31 3:59pm

I was diagnosed eighteen months ago with locally advanced prostate cancer that metastasized to one regional lymph node. My cancer is considered highly aggressive, Gleason 9 with a decipher score of 1. I have also tested positive for Braca 2. My oncologist recommended radiation with twenty four months of hormone treatment. I’m taking Orgyvx and Abiraterone with prednisone and finished my radiation treatments approximately a year ago. My side effects from hormone treatment have been frequent hot flashes and fatigue. I’m scheduled to complete my hormone therapy in January/2026. I know standard of care for my stage of cancer, 4a, is considered to be twenty four months of hormone therapy, but I’m wondering if I could realize any additional benefit by staying on it longer that what’s recommended. I’ve asked my oncologist and he said there aren’t any studies that have been done on additional benefits of hormone treatment past twenty four months. My understanding is hormone treatment is supposed to kill micro metastatic disease and my concern is if I get off too soon I might leave cancer cells behind that could have otherwise been killed if I stayed on longer. My oncologist told me I have a possibility of a cure and I want to be as aggressive as possible. Has anyone stayed on longer and what has been your experience/outcome?

Tom

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chippydoo | @chippydoo | Jun 1 11:33am

I would listen to my oncologist. If the studies say no then no it is. Quality of life is a consideration too. I don't know a single soul that wants to stay on ADT for a lifetime. The fear of death is strong, but the journey to the end should have some quality of life too. I am 4.5 months in on my 6 month ADT and so looking forward to feeling like my old self again. Best wishes on your journey.

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jeff Marchi | @jeffmarc | Jun 1 2:49pm
In reply to @tom57 "I haven’t heard of wave two for hot flashes, I’ll definitely look into it. Thanks for..." + (show)
@tom57

I haven’t heard of wave two for hot flashes, I’ll definitely look into it. Thanks for the information. For my fatigue I work out three times a week and also go ice skating which in combination really seems to help. I’m seeing an oncologist at Northwestern Medicine in Chicago which is considered a center of excellence. He is open to me staying on ADT longer, but I’m thinking I might also get another opinion, probably Mayo. Thanks for responding.

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I forgot to mention. During those eight years I was on ADT, if I reduced the drug I was using at all either ADT or Zytiga, Even a little bit, My PSA would go up very quickly. I’m pretty sure that is due to the BRCA2 since I am a Gleason 4+3.

2 years ago I tried going from 4 Zytiga to 3 Zytiga and my PSA rose from .2 to 1 in 18 days.

Get tested within 1 month of stopping ADT.

Discuss going on the PARP Inhibitor early with your doctor. There’s been a lot of buzz lately about it making a big difference long term. There’s even been a study using it early with Enzalutamide. I don’t know if it would be beneficial for you now, but The doctor you have probably has some good information about it.

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1 reply
tom57 | @tom57 | Jun 2 7:53am
In reply to @kujhawk1978 "Well, you could come off treatment and then actively monitor with labs, consults and depending on..." + (show)
@kujhawk1978

Well, you could come off treatment and then actively monitor with labs, consults and depending on insurance imaging.

The frequency of those, discuss with your medical team, likely every three months for consult and labs, six to 12 for imaging.

There are isolator continuing, castrate resistance, the side effects, impacts to your systems - organ, bone...the impacts to bone, organs can be monitored and mitigated.

There are different schools of thought on curing advanced PCa. Let's hope your medical team is right but have a plan for lifelong management!

If you come off treatment, one benefit may depend on T recovery, how long it takes vice how long your PCa takes to get active again. That's an unknown, baseline T, age, duration of ADT.

One scenario is you cone off treatment, your T is slow to recover but your PCa is not, then, what have you gained? Then again, the opposite could occur, T recovers quickly, PCa slumbers along much longer, life with T is good, that we know!

The two tines I've been on ADT have not gotten in the way of what I do, just how I feel doing it.

There are mitigating strategies that you control:

Diet
Exercise
Managing stress.

As other indicate, your medical team has some medical aids to mitigating the side effects too.

There is no right answer here. There are good answers based on guidelines such as NCCN and AUA, the "science." There is more clinical data in a multitude of clinical trials too.

If you have confidence and trust in your medical team, consider their recommendations in your decision making!

Kevin

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Kevin,
Thanks for the good information and suggestions. I have confidence in my medical team, but I’m thinking of getting a second opinion at Mayo. I’m not scheduled to complete my 24 months of hormone treatment until January/26, so I’m using this time to look into my treatment options.
Tom

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tom57 | @tom57 | Jun 2 7:57am
In reply to @jeffmarc "I forgot to mention. During those eight years I was on ADT, if I reduced the..." + (show)
@jeffmarc

I forgot to mention. During those eight years I was on ADT, if I reduced the drug I was using at all either ADT or Zytiga, Even a little bit, My PSA would go up very quickly. I’m pretty sure that is due to the BRCA2 since I am a Gleason 4+3.

2 years ago I tried going from 4 Zytiga to 3 Zytiga and my PSA rose from .2 to 1 in 18 days.

Get tested within 1 month of stopping ADT.

Discuss going on the PARP Inhibitor early with your doctor. There’s been a lot of buzz lately about it making a big difference long term. There’s even been a study using it early with Enzalutamide. I don’t know if it would be beneficial for you now, but The doctor you have probably has some good information about it.

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Thanks for the information Jeff, I will discuss the treatment options you mentioned with my oncologist.
Tom

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chippydoo | @chippydoo | Jun 2 9:00am
In reply to @tom57 "Thanks for the good information, I’m thinking I might stay on it longer than the recommended..." + (show)
@tom57

Thanks for the good information, I’m thinking I might stay on it longer than the recommended 24months. My oncologist is open to the idea, but warned me of the risks, but I think it’s a reasonable trade off.

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Have you had an ADT holiday and the opportunity to see if you rebound?

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tom57 | @tom57 | Jun 2 10:24am

I haven’t had an ADT holiday. The original plan was to be hormone treatment for 24 months and then discontinue and see how I respond. Thanks.

Tom

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bluegill | @bluegill | Jun 2 11:05am

I did 3 years of ADT, then a one-year holiday, then PSA shot up, so now I'm in my 4th year with my freindly Lupron Leprechaun. We get along OK now.

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jime51 | @jime51 | Jun 2 2:14pm

I'm intrigued: you want to stay on ADT longer and I want to cut it short! I was diagnosed as "regional risk" (prostate + iliac lymph nodes) with Gleason 7 (3+4, 4+3) in December. I started Orgovyx Christmas Eve and completed 44 radiation treatments(26 pelvic, 18 prostate-specific) April 22. PSA 6.4 at diagnosis, 0.01 May 22. One of my oncologists believes the PET interpretation, but another thinks the seriousness was overstated. So, I'm only on Orgovyx rather than a combination of ADT and ARPI. Doctors suggest 24 months, but I'm hoping to be allowed to switch from ADT to ARPI at 12 months, planning to catch and strangle any cancer cells that escaped radiation and are in Satan's workshop working with the elves to build castrate resistance. 5 weeks following radiation, I'm feeling a little better, but I've had every Orgovyx side effect listed on their website but one and my testosterone is 0. I think now that I'll be ok, but in March I was ready to stop treatment and accept the consequences. I don't wish hormone therapy on anyone, friend or foe.

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1 reply
Sicetnon3 | @sicernon3 | 3 days ago

Your PC sounds a lot like mine and I have wondered the same.
I think if it makes you feel more secure and comfortable go for it if your doctor allows.

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michaelcharles | @michaelcharles | 2 days ago
In reply to @jime51 "I'm intrigued: you want to stay on ADT longer and I want to cut it short!..." + (show)
@jime51

I'm intrigued: you want to stay on ADT longer and I want to cut it short! I was diagnosed as "regional risk" (prostate + iliac lymph nodes) with Gleason 7 (3+4, 4+3) in December. I started Orgovyx Christmas Eve and completed 44 radiation treatments(26 pelvic, 18 prostate-specific) April 22. PSA 6.4 at diagnosis, 0.01 May 22. One of my oncologists believes the PET interpretation, but another thinks the seriousness was overstated. So, I'm only on Orgovyx rather than a combination of ADT and ARPI. Doctors suggest 24 months, but I'm hoping to be allowed to switch from ADT to ARPI at 12 months, planning to catch and strangle any cancer cells that escaped radiation and are in Satan's workshop working with the elves to build castrate resistance. 5 weeks following radiation, I'm feeling a little better, but I've had every Orgovyx side effect listed on their website but one and my testosterone is 0. I think now that I'll be ok, but in March I was ready to stop treatment and accept the consequences. I don't wish hormone therapy on anyone, friend or foe.

Jump to this post

ADT recommendations vary from different Drs and Institutions; all trying to get you the best PCa control possible together with the best QOL maintainable.
PCF.org just had and posted a webinar in late May on Hormone Therapy that you might find interesting.
Best wishes

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