Weighing the cancer risk reduction & quality-of-life cost of ADT?

@dietzpagan
You should request a second opinion oncologist from Doctor Andrea Harzstark. She is the only Genito urinary oncologist at Kaiser in the whole country. She’s been my doctor for eight years and she is incredibly good. She was trained at UCSF and I have never asked her a question. She did not know the answer to. She make sure to meet with every one of her patients every three months either they’re with a video or telephone call.

With an advanced case like you describe, she is the person you want helping make decisions for you. I have told her that I want a certain drug and she has agreed to let me have it. That’s why I’m on Orgovyx and Nubeqa now. After 16 years of PC, I’ve been undetectable for the last 26 months. I have BRCA2, which makes my cancer much more aggressive, It’s come back four times but she has been really helpful with everything.

Never heard of the SPOP mutation. Do you know if the PARP inhibitor works with it? I know it does work with some other mutations besides BRCA.

I was on Zytiga for 2 1/2 years. It caused me to have four Afib Events. One of them landed me in the hospital for four days because they couldn’t bring my pulse down due to an antibiotic I took. Zytiga also gave me high blood pressure for which I am still taking three pills twice a day. The drugs do keep my blood pressure quite stable and low. Zytiga causes a lot of fatigue for some people, If that happens, they need more than 5 mg of prednisone. Just some things to be aware of. Nubeqa Has really worked well for me. I’ve had absolutely no side effects from it. I do know people that have been on Zytiga for five years and it worked quite well for them, Everyone’s different.

Sorry for the repeat information I find it difficult to track what I have told people in the past

Hi Jeff,
Thank you for your reply. Thanks for the recommendation of Dr. Andrea Harzstark. I did go to UCSF back in April 2025 for a second opinion and paid for it myself. That sure is a nice hospital.
Here is an very interesting video about a trial about SPOP. Type in on youtube "Association of SPOP mutations with outcomes in men with DE Novo metastatic castration sensitive prostate cancer".
It's great you run the track twice a day and work out 3 times a week with weights as I run and work out as well.

My previous email to you below
Thanks Jeff

I’ve been reading some of your postings. I have Kaiser too. I go to the Vallejo Kaiser as I live in Vallejo. For me I have stage 4 metastasis prostate cancer diagnosed 14 months ago Gleason 8. Bones and lymph nodes. PSA was 600 at diagnosed. Put on Lupron and then 2 months later added Zytiga. 4 months after diagnosis PSA 0.1 and has stayed that way as of today. I have SPOP mutant. 10 percent of men get that. I’m 70 and workout like you and know that is a big help.
Wondering what you think of Kaiser. Are they a center of excellence for cancer or even close. With Kaiser senior advantage Medicare plan I would imagine it would be hard to switch to just regular Medicare so I could go to any hospital. Your thoughts ?
Thanks and have a nice day

I believe you are eligible for PROVICTO without first going through chemotherapy.

The side effects of ADT can be awful and also permanent, depending on the length of time on ADT, your general health and your age. That said, death from prostate cancer can be awful and is definitely permanent, regardless!

@dietzpagan I have PC for ten years now and have had a radical prostatectomy, salvage radiation, radiation to a lesion on my sacrum and a variety of treatments and medicines including IPP and AUS implants. I have been on Medicare with Kaiser (Irvine and Anaheim) and they have covered everything with little or no cost to me. I consider Advantage a ripoff. I have been very happy with Kaiser. Their Medicare and facilities are great, but your individual doctors are probably more important. I’m happy with mine.

I am interested in the discussion here about NNT, number needed to treat. As I tried to get an understanding of this, I saw that there is also NNH, number needed to harm. Clinicians get enthusiastic about a treatment if there is a low number needed to treat combined with a high number needed to harm.

I don't claim to have a good understanding of how, exactly, to apply info like NNT to my decision as to whether to accept ADT or not.

Any time my RO answered my question as to what is the benefit for me from his prescription of 2 years of ADT he says 20%. I believe he means doing the 2 years improves my possibility of survival over some time period by 20 points. I have always viewed his answer somewhat skeptically. There is more to it. I don't assume he is wrong though. I believe I did not and so far do not understand enough to knowledgeably discuss this with him. That hasn't stopped me from bringing the subject up once in a while.

As Kishan himself says in the video the OP soli recommended: "we hope to get to a time one day where we can really confidently tell someone if they need hormone therapy or not".

As Jeff Marchi put it, "it stops your metastasis from growing and keeps any cancer from starting to grow... [so] ...it benefits everyone". Exception: ADT doesn't work in this way in up to 20% of PCa patients. And it only works in the other 80% until it doesn't. But when it works, its incredible.

I've been taking Orgovyx for a bit more than 2 months and my PSA has dropped from 7 to 2. My RO confirms this means its working for me. I am therefore an enthusiastic supporter of 2 months of Orgovyx. The side effects I've experienced are tolerable, and the benefit of feeling like my cT3b cancer is experiencing a major setback is a great feeling.

I took a look at the Kishan video: I note that Kishan starts out by describing two basic types of RT, external and internal, but then says he limits this talk to external. I found that odd the first time I saw this video some weeks ago, and even more odd as I see someone refer to this video as one of their premiere sources for their opinion of ADT.

The thing about internal RT, i.e. brachytherapy, is the dramatic effect it appears to have on reducing the time anyone would prescribe ADT for. Evidence is continuing to accumulate that external beam of any type combined with brachytherapy boost results in an improved recurrence free survival time and allows less time on ADT.

The TRIP trial showed that high risk patients given EBRT plus BT boost and 30 months of ADT had no measurable outcome that was different than patients given EBRT plus BT boost and 12 months of ADT.

Of course, if a patient has already had their prostate removed, a BT boost is out of the question. For those reading this who still have their prostate, search on "How Much is Enough? with Dr. Nelson N. Stone, MD" to hear Dr. Stone's view. Look up the TRIP study to see its conclusion.

My medical oncologist pointed out that the TRIP criteria only considered high risk patients up to pT3a, not cT3b as my case is, but he expressed interest in what my RO would say. Once I asked my RO about TRIP he reconsidered his external beam only plus 2 year prescription of ADT and scheduled an appointment to more fully evaluate my eligibility for a BT boost.

My RO is chief of the BT program at his institute, but he had initially told me it looked like I would not be eligible for a BT boost due to gland size and LUTS. My enthusiasm for a longer recurrence free survival time and less time on ADT appeared to play a role in his decision to reconsider.

@climateguy
Well, as you are finding there is an issue with using BT when you have a very large prostate. You don’t mention how big yours is. ADT can reduce the size. Is it possible as yours is on the edge of being able to be treated and that’s what the RO wants to look into.

Was your LUTS caused by BPH? That can make your prostate bigger and there are treatments you can do To reduce the size and the problem.

It does appear you really want to do BT. It would be nice to not have to take ADT in case BT is denied. You might Consider estradiol instead of ADT. It has the same effect on testosterone, but doesn’t have a lot of the side effects. You may have to find a doctor that’s willing to do it, but studies have definitely shown it works.

I’m not sure where NNTP fits into this. You have T3b you need to treat, it’s just a matter of how you treat.

@jeffmarc My prostate was measured as 62 cc prior to taking Orgovyx. That size is not a barrier to brachytherapy in Europe, the U.K. or Canada. It was an issue, but research has shown that as BT technique improved, larger glands can be treated without issue.

When the Europeans changed their brachytherapy size limit from a stated "50 - 60 cc limit" to "much larger glands can be successfully implanted... with good results" they cited a paper by a Mt Sinai researcher, Dr. Nelson Stone, who found that glands greater than 100 cc could be treated with no increase in toxicity. There are US BT clinics who advertise they do larger glands.

My RO says my prostate will be smaller now that I am on ADT. He is interested in studying my LUTS, so I will know what he thinks after he does his imaging and whatever else his plan calls for. He has changed the way he talks about brachytherapy completely, from I am not eligible, to descriptions of how he intends to do his HDR BT, as if he feels confident that his imaging studies will not convince him otherwise. I appreciate that he is very interested in being confident that he is choosing what he believes is the best course of action.