The waiting is terrible

There are side effects, mainly fatigue, but if you exercise daily it helps you feel better. The hot flashes are not that bad as they are short in duration.
I actually started ADT right after my biopsy results, as my Gleason score was 4+5. I then had the PSMA Scan about 2 weeks later. For stage 4, ADT is the first step in treatment. The side effects of ADT are nothing compared to what the cancer growths will do to your organs and bones. If I had not had my annual PSA test, I most likely would have died from kidney failure with out any treatment. My only symptoms were more frequent urination at night and some strange pains in my upper legs off and on.

As for ADT, it's magic. Combined with radiation, surgery, and a 2nd gen ARSI (one of the so-called "-lutamides"), it has kept me in that remission for 3½ years, and I'll likely be on ADT and an ARSI for life.

The side-effects aren't great, but compared to what metastatic cancer can do to your husband, they're really not much to worry about. Over time, most of them have become more mild for me. Even sex is still possible on ADT (lots of info here in the forum), and other side-effects can get milder with simple mitigations like regular exercise, reducing alcohol consumption, a fan in the bedroom (for night sweats), etc.

beaquilter, I don't have any answers but I can give a virtual hug and a prayer. You tell him to hang in there and never give up.
I'm 62 and caught mine early, Gleason 8, and will be having a complete prostate removal in the near future.

I am sorry to hear of your news. I have stage 4 , metastasized to the bones and a couple lymph nodes. My psa at the start was 936. Terrible pain in my leg sent me to the doctor. Although there is no cure right now, they can control it. Nobody likes the side effects of the treatment, but it can keep us going forward. I just passed the two year mark. Support is so important, and as North mentioned, you need take time for yourself as well. It is quite the roller coaster of a journey but over time it does get easier to accept. Stay strong and carry on. I wish the best for you and him on this journey. Best to all.

@beaquilter
I agree with @gently. Contact Mayo or Duke immediately and ask them for a telehealth consultation. They will use your biopsy and any other testing i.e., the Decipher test, to evaluate your husband and make suggestions. Come back to this site when they give you the consult and let us know what they said.

Thanks for the reply...
We do have great support from our church and friends and our 4 kids.
It just seems so dire, because the bones and lungs and everything else, statistics look very bad. Of course we'll see what the doctor says. But my husband is getting "his affairs" in order. He's just hoping our kids will remember him, our youngest is 9 (9, 12, 20, 22)

From what the urologist told us, surgery is too late for my husband now.

Thanks we'll see what the doctor says, it's all so scary.
Hopefully they can do something.

As others have said, the future may not be as dark as where you are now with waiting.

As @jeffmarc has said, seeing a Genitourinary Oncologist is a good thing. He also discusses doublet or triplet therapies. Here is one article, you can find others - https://www.urotoday.com/video-lectures/asco-gu-2024/video/3858-triplet-delays-further-therapy-versus-doublet-in-metastatic-hspc-neal-shore.html.

There are other resources to peruse and inform yourselves before the consultation. One example, the NCCN Guidelines which provide a framework on which to base decisions regarding the workup of patients with prostate cancer, risk stratification and management of localized disease, post-treatment monitoring, and treatment of recurrence and advanced disease - https://www.nccn.org/guidelines/guidelines-detail?category=patients&id=50

Another example is the Prostate Cancer Foundation - https://www.pcf.org/guide/

NCCN Guidelines are the science behind treatment recommendations by the medical community.

To the extent you can, spend time before your consultation informing yourself about PCa, terms - Staging System, Grade Groups, Gleason Score, ADT, PSA Doubling and Velocity, Genomic Testing... definitions, treatment guidelines. It may serve you well in discussions with his medical team about treatment.

Treatment involves side effects, his ability to manage those is in part a function of:

Exercise
Diet
Managing Stress

By all means, stay connected with the members on this forum, there is a wealth of experience all aspects of managing our lives with this PCa.

Kevin

Surgery is very uncommon after metastasis just because the cancer has already left the prostate, so there's little justification for putting the patient through the extra trauma of surgery.

There's still the option of radiating the prostate, though, and it's just as effective — that's something to discuss with his care team.

Some oncologists believe that neutralising the "mothership" (the primary cancer) reduces support for the metastases and slows progression — it's a relatively new concept, which Dr Walsh discusses in the book linked earlier in this thread.

A "triplet therapy" approach for your husband might involve chemo, radiation, and ADT close together to try to give the cancer a 1-2-3 knockout punch (vs the old-school approach of one thing until it stops working, then the next, etc, until they tell you you're out of options😢), but it's a tough decision. I'm glad I went with a big, multi-pronged, up front attack on my metastatic cancer (my oncologist called it "throwing the kitchen sink" at it), but everyone's situation is different.

I wish all the best to both of you.