Has anyone gone off hormone therapy (ADT) after radiation?

My husband's Gleason score was 7 (4 plus 3). According to the PSMA , he has about 5 cancer spots in his lymph nodes. He has never ad hot flashes. He says he thinks he has brain fog; in the morning it takes a bit to kind of clear his head. According to a blood test last week, his testosterone is less than .2. Same with his PSA. Biopsy in Sept 2024 said left base prostatic adenocarcinoma Grade 4. Rt. middle zone prostatic cancer Group 2, 3 +4; Cribiform absent Intraductal Absent, Cancer 3/23 cores . Periprostatic fat absent. cancer 3 % of all core tissues. The urologist said that we had caught it early; no worries. The earliest we could get to an oncologist was 6 months later. By that time, we had an MRI and paid for our own PSMA - The PSMA showed Metastases to left internal iliac/perirectal lymph node; Right internal iliac lymph node by vas deferens; Enlarging 14mm internal iliac/right pelvic sidewall lymph node; Enlarging right junctional iliac lymph node; Right external iliac lymph node; common ilic lymph node; left common iliac lymph node; retroaortic triangular lymph node; elongate left pelvic sidewall/internal iliac lymph node; left junctional iliac lymph node metastesis. He has been on Elegard (first injection May 15 2025); and Abiraterone and Prednisone June 1st. .

@gkgdawg

This addresses a question I have also: if the spread is beyond the oligometastatic number of 5 in the pelvic lymph nodes (only or can other lymph nodes count?) you've lost the option for a possible long remission (cure) with radiation, along with ADT?
If this isn't the case, and there are too many lesions, then the only option is 18 mo's of ADT and ARPI to indefinite use of ADT/ARPI?

@barblouise

Hi, Barb:
Are these questions or statements? I think my husband had about 6 lymph node lesions. I asked the doctor, this past week, when we had a visit, but she was having difficulty finding the scan to count them. At maximum, I think it would be 7. The Medical Oncologist said she understands my concern with long term hormone therapy, and the effects it has on the body and quality of life. She suggested that we continue for another 6 months and see if there are anymore studies in regard to this question.

Has anyone taken the option of penile injections to prevent atrophy?

Glenda

@gkgdawg
To prevent atrophy, you want to get a penis pump. The pump will get you erected to a certain point, but probably not stiff enough for Intercourse. Many people are getting Cialis to use daily to keep the blood flow working properly.

There are a number discussions in this form about using Trimix and Bimix Injections to get good stiff erections. You should go to the top of the forum and do a search for it and you’ll be able to read a lot of People’s opinions and personal experience.

Here’s some info from the experience of one person in this group
https://connect.mayoclinic.org/discussion/my-trimix-experience/
If you have a visible metastasis, they should be treated as soon as possible. At least that is the opinion of doctors like Doctor Scholz Who does the PCRI conferences?

They can use SBRT radiation on all of those metastasis to get rid of them. Normally, if you have over five, they want to use chemo or Pluvicto, But I know people who’ve had as many as 15 mets Zapped with SBRT in multiple sessions.

I think it might make sense to go to a center of excellence and get a second opinion on treating these mets.

I’ve been on ADT for eight years. I don’t get the fatigue, but I run a mile twice a day and go to the gym three days a week to do weight training. Those help keep my muscles up and help prevent the fatigue that people get. You can be really tired and then go walk or run or do exercises and find that the fatigue becomes much less. You may get hot flashes, I had really bad hot flashes for the first year, but my doctor recommended a depo-provera Shot and it really worked. I got them quarterly for about four years. There are other issues that come up if you have problems, you can post about them here and people will give you Their experiences and how they resolved them.

@jeffmarc
Thank you so much, Jeff. There is so much information on this site. Our radiation oncologist didn't use SBRT. I asked him why that was (after the fact) and he said that the lesions were spread out. That you needed your lesions to be close together, in order to do SBRT. Unfortunately, being in Canada, we don't have the same flexibility about going to a centre of excellence or even finding alternative doctors. There are positives, in that the treatments are free, but there are, definitely, serious negatives to universal medicine.

I will look up some of the things you shared.

Warm regards

Glenda

Thank you very much, John. My husband has been going to the gym three days a week, walking about 7 km on alternate days. We spoke with the Medical Oncologist this week, and I shared a link with her from PCRI which discussed intermittent ADT. She said that we can discuss it again in another 6 months. He has been on hormone therapy for 6 months so far.

Warm regards

Glenda

Thank you very much, John. My husband has been going to the gym three days a week, walking about 7 km on alternate days. We spoke with the Medical Oncologist this week, and I shared a link with her from PCRI which discussed intermittent ADT. She said that we can discuss it again in another 6 months. He has been on hormone therapy for 6 months so far.

Warm regards

Glenda