I don't want hormone therapy again: What are my options?

Posted by oesjipapa @oesjipapa, Sep 14 4:26am

Hello, I was treated for prostate cancer discovered in late 2024; my PSA was 14.2, Gleason score 9, and PIRADS 5—so, an aggressive type. The treatment plan consisted of 28 sessions of external radiation and 24 months of hormone therapy; however, I stopped the hormone therapy after 17 months due to side effects—I felt like a physical wreck. I stopped taking Orgovyx on June 16th of this year with a PSA level of 0.14, and I have another PSA test coming up on October 22nd—a result I am naturally very anxious to see. Suppose the tumor hasn't been completely destroyed; what follow-up options might be available? I am not willing to start hormone therapy again; would stereotactic radiation be an option in that case? Does anyone here have experience with this, has been through a similar situation, or can offer me some advice?

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

Profile picture for emilioz @emilioz

It's not a common choice, but castration is an option if you can accept it.

Jump to this post

@emilioz And apparently they have prosthetic testacles so that you still look unchanged from the outside.

But note that an orchietomy (the medical term for castration) still produces the main side-effects of ADT, which are related to low testosterone rather than to the medication itself. The benefit of a non-pharmaceutical approach is less strain on the kidneys and/or liver (not sure which).

REPLY
Profile picture for oesjipapa @oesjipapa

@jeffmarc I don't want any ARPIs, ARSIs, or other chemical drugs in my system—they all have side effects and I want to get away from that—but anyway, let me just wait and see what the results are on October 22nd.

Jump to this post

@oesjipapa A friend had SBRT; his RO at Sloan told him that if he suffered recurrence - and it was contained - seeds were an option.
Don’t know HDR/LDR or any other particulars…but good thing to pursue…Best,
Phil

REPLY

TLI (?) is the converse of TMI. A classical Gleason RISK
of metastasis score without a DECIPHER (genomic)
test, ARTERRA AI review of biopsy slides, MRI, and PSMA PET/CT scan data shouldn't lead to speculative choices of treatment. Moreover, one left-sided G9: 4/5, 10 mm tumor without other factors, e.g., cribriform (a version of type 4), intraductal features, is a very different scenario from many both-sided large tumors, seminal vessel extension, etc.

For those who may have an interest: PCRI.org is having a live conference the W/E of the 19-20th September 2026 for a modest fee, if watched in real time. It is free the following week, I believe. It will spotlight experts in the field of focal therapies.

REPLY
Profile picture for heavyphil @heavyphil

@oesjipapa A friend had SBRT; his RO at Sloan told him that if he suffered recurrence - and it was contained - seeds were an option.
Don’t know HDR/LDR or any other particulars…but good thing to pursue…Best,
Phil

Jump to this post

@heavyphil Sorry maar zaadjes zegt mij niets heb wel voor mjn uitwendige bestralingen 4 tumor markers geplaatst gekregen.

REPLY

What a great question!! I am keenly interested in the responses that you're likely to get here, so I'll be watching this thread very closely. As a "recurrent, high-risk, advanced, but localized and non-metastatic" patient myself, I am being consistently told that salvage surgery or further radiation treatments are out-of-the-question for me; that there are no other real or practical alternatives, other than returning to ADT treatments of some kind (e.g., Orgovyx, likely followed by Nubeqa).

Meanwhile, I'll hear from others that strictly speaking, this is not true, that SBRT, or other 'focal' therapies (Cryo or HIFU), may in-fact be perfectly possible, maybe even "advisable"? So for me, it's become pretty clear that obtaining sound, consistent guidance on the matter, regardless of professional credentials or source, is NOT as simple as 'walkin'-the-dog' or 'glue-on-a-stick'. It's actually proving to be a veritable "minefield"!

P.S. - I should also add that many of those who suggest the possibility of 'focal' or ablation therapies, often say that the duality of added ADT (in addition to SBRT, Cryo or HIFU), would likely still be recommended or required.

REPLY
Profile picture for Too-Many @toomany

What a great question!! I am keenly interested in the responses that you're likely to get here, so I'll be watching this thread very closely. As a "recurrent, high-risk, advanced, but localized and non-metastatic" patient myself, I am being consistently told that salvage surgery or further radiation treatments are out-of-the-question for me; that there are no other real or practical alternatives, other than returning to ADT treatments of some kind (e.g., Orgovyx, likely followed by Nubeqa).

Meanwhile, I'll hear from others that strictly speaking, this is not true, that SBRT, or other 'focal' therapies (Cryo or HIFU), may in-fact be perfectly possible, maybe even "advisable"? So for me, it's become pretty clear that obtaining sound, consistent guidance on the matter, regardless of professional credentials or source, is NOT as simple as 'walkin'-the-dog' or 'glue-on-a-stick'. It's actually proving to be a veritable "minefield"!

P.S. - I should also add that many of those who suggest the possibility of 'focal' or ablation therapies, often say that the duality of added ADT (in addition to SBRT, Cryo or HIFU), would likely still be recommended or required.

Jump to this post

@toomany

It all depends on many parameters - that is the "catch".
Theoretically "there are many options" , but when you read studies you will see that there are many limitations for each of above mentioned procedures. They will list prohibitive things from the "location of recurrence", amount of RT already received, to age , to comorbidities, to life expectancy to ... - you name it.

REPLY
Profile picture for surftohealth88 @surftohealth88

@toomany

It all depends on many parameters - that is the "catch".
Theoretically "there are many options" , but when you read studies you will see that there are many limitations for each of above mentioned procedures. They will list prohibitive things from the "location of recurrence", amount of RT already received, to age , to comorbidities, to life expectancy to ... - you name it.

Jump to this post

@surftohealth88 Thank you, and yes indeed, that's precisely right. Its those many "limitations", opinions and discrepancies that lead to the general confusion, but I think all of it is a necessary and worthwhile process to undertake, because at least for me, it's slowly leading to some clarity.

REPLY

Alternatives to standard hormone ADT therapy via the Patch/Stampede trials show positive results using estradiol patches, without major side effects except some minor breast soreness/enlargement. Quality of life is greatly improved with estrogen patches. See the New England Journal of Medicine article Spring 2026 and several follow-up online videos about the Patch study for metastatic/non metastatic patients. This is a particulary strong protocol in Britain - Pharmas hate it due to the very low cost of patches. It is prescribed as "off label" to date but many caring oncologists have prescribed it, sometimes in conjunction with Nubeqa, as a replacement for standard Lupron/Orgovyx. Patches are safer for concerns of cardio and osteoporosis, with reduces hot flashes, fatigue, etc.

REPLY

I only recommend this as an adjuvant, not as a primary therapy. I have been taking daily doses of Turkey tail mushroom tea for 4 years now. I was diagnosed with a PSA of 54.0. I had 42 sessions of IMRT during the winter of 2021. My urologist says I am doing better than he expected. There is good research that Turkey tail mushroom taken orally attacks prostate cancer stem cells. The Mayo clinic is currently running a drug trial on it to reduce the size of breast cancer tumors prior to surgery.

REPLY
Profile picture for rwski79 @rwski79

Alternatives to standard hormone ADT therapy via the Patch/Stampede trials show positive results using estradiol patches, without major side effects except some minor breast soreness/enlargement. Quality of life is greatly improved with estrogen patches. See the New England Journal of Medicine article Spring 2026 and several follow-up online videos about the Patch study for metastatic/non metastatic patients. This is a particulary strong protocol in Britain - Pharmas hate it due to the very low cost of patches. It is prescribed as "off label" to date but many caring oncologists have prescribed it, sometimes in conjunction with Nubeqa, as a replacement for standard Lupron/Orgovyx. Patches are safer for concerns of cardio and osteoporosis, with reduces hot flashes, fatigue, etc.

Jump to this post

@rwski79 I too have been looking into the feasibility of this approach, after having been alerted to its possibility by member @jeffmarc, and I thought that I had read somewhere that such treatments were still technically "unavailable" (or officially un-approved for use), here in the U.S.

And, it appears that I am incorrect on that, because it appears that a limited number of American physicians "may" in-fact be prescribing them out there. However, my own wife is a practicing pharmacist, and she tells me that at least in the multiple pharmacies here locally, such estrogen patches have been on backorder for many months, due to the large demand by female patients treating their own menopause symptoms.

P.S. - And yes, I'll bet "Big Pharma" does indeed "hate" it! It may actually work, and work fast, plus there's no real money to be had for them. 😏

REPLY
Please sign in or register to post a reply.