ADT and Castrate Resistance

You wouldn’t believe where I’m being treated. I won’t reveal because my relationship with the hospital has been contentious at times

I agree with you. I’m dealing with a mini stroke after a retinal detachment. On my way to a neurologist right now

After this fire drill, getting a second opinion on prostate is my priority

Im living this now

Gleason 9, PSA 40 July 2022

On degarelix/Lupron for a year. Also secondarily on immunotherapy prescribed for a concurrent small bowel cancer. Immunotherapy absolutely destroyed/cured bowel tumor and oncos erroneously thought it had done the same for prostate cancer.

Based on this erroneous belief, we ceased all treatment and I spent about eight months under the blissful fantasy that I have been cured of two cancers. Well, the prostate cancer came roaring back like a hurricane maybe someday I’ll post about the emotional impact of this whipsaw. Hint: it wasn’t small.

So I went back on ADT in July 2024 and just went off at on June 23 of this year

In between I had a prostate ectomy, but my surgeon did nothing with my lymph nodes that had lit up on a PSMAPET scan. Biopsy of nearby lymph nodes was clean as where my margins.

So anyway, my point is that I believe I have two cancerous lymph nodes that have never been treated yet. I just went off ADT and like clockwork. My PSA is on the rise. I asked my surgeon and my oncologist over and over about the failure to address the lymph nodes, and I never understand the answer

So already I’m confirmed for a recurrence and right now. I have absolutely no treatments going on for it. We’ll do another blood test on August 20. Not only for PSA, but for diabetes because God has a really twisted sense of humor

Beginning to worry that I’m castrate resistant and I guess I just can’t jump back on ADT like you jump on an off subway.

But if my case is illustrated in any way, your concerns are warranted. On the other hand, there are other guys who go off ADT and seem to be OK for months, but I don’t know anybody whose lymph nodes were ignored during surgery. Who had that outcome

In the bullpen, I still have radiation and immunotherapy. As much as I hate ADT and my man boobs, I’m channeling Joni Mitchell when I say you don’t know what you got till it’s gone. I view the fatigue man boobs, and tears as a small price to pay for the two or five extra years at ADT could buy me.

Ken, Awful, awful rollercoaster ride for sure…why are they not, at least, treating the reactive lymph nodes with SBRT?
If your PSA drops, that was the issue, no?
Phil

I’m 64. Onco talks positively about my life expectancy and he’s worried about downstream cancers caused by radiation. I have lynch syndrome so other cancers risk is already elevated. We’ll do a PSMA soon & then they’ll be treated by current doctors or someone else.

“You have to realize that if your PSA starts rising quickly they will put you right back on and you will not have any cancer spread. That will tamp it down again.”

Unfortunately, this wasn’t true for me. My oncologists thought I’d been cured by immunotherapy, an exceptionally rare outcome in prostate cancer. We agreed I’d cease ADT. Not immediately but soon enough my PSA started increasing & we didn’t do scans until it hit 6. An MRI - useless for lymph nodes, imo - was all clear. 4 weeks later PSMAPET showed SUV uptake of 7-8 in two LNs that had never had SUV uptake or been noted by radiologists.

This was a special circumstance. I think people got excited to prove that immunotherapy could cure PC.

But at the risk of being a downer, I just wanted to let everyone know that the assumption that your oncologist will step in immediately when your PSA starts increasing after cessation of ADT isn’t necessarily true. An oncologist who has declared you as cured or likely to be in long-term remission can be stubborn to admit he was so wrong so soon .

I can’t stand typing these words because I wish I could go back to last year when my PSA hit 2 and say , give me the bleeping ADT again right bleeping now

Was your oncologist a medical oncologist? I don’t think a GU oncologist Or a center of excellence would let your PSA rise so much without thorough testing. They know better, whereas a medical oncologist works with all different types of cancers so they can’t really concentrate on what’s going on with prostate cancer. Pretty obviously, they ignored real facts just to justify their idea that they had a Immunotherapy solution to prostate cancer.

If there was such a solution, why is it not even known by other doctors? Because there is no such solution.

My doctor and surgeon know prostate cancer inside out.

There is sometimes an immunotherapy solution, perhaps a cure, to prostate cancer, but it’s rare. I’m one of 2-3% of men whose PC has these 3 attributes: MSI-H dMMR, and high TMB (tumor mutational burden).

There was evidence that my prostate cancer was completely eradicated but for various reasons we stopped the immunotherapy too soon. There are cases, rare, of men who were entirely free of PC after immunotherapy of 2 years

Back to the odds: of the 2-3% of men w the “right” kind of tumor, only half respond and about half of responders have a complete response (NED).

So maybe 1% of prostate cancer patients will have a complete response to immunotherapy. Therefore, the population of compete responders is small & data on how they fared 3, 5, 7+ years out is nonexistent.

So - yes, we have no bananas and yes we have no immunotherapy cure for PC but if some of the complete responders are NED at 5 years+, we may start using the C word - but for only the extremely lucky 1%.

Btw, this is true for other cancers. The “miracle”, highly-publicized cure of multiple rectal cancer patients ant Memorial Sloan Kettering involved only patients with the genetic attributes I listed above. GI cancers have far more incidences of these “right” mutations and tend to be more immunogenic. But it’s important to remember that in most cases, immunotherapy only works on specific types of tumors. When the press picked up on the Msk miracle story, they often left that detail out. To Msk‘s credit, they put it in the press release.

I’m going overboard writing about this because I want people to be aware of immunotherapy but I don’t to mislead anyone. It’s a longshot and over-reliance on it may have been behind my advance to stage 4.

I want to try immunotherapy again but not until my lymph nodes get radiation & not without firm agreement on when we pull the plug if it doesn’t appear to be working

I met a cancer researcher who told me that most immunotherapy to date is like a buffet for cancer cells - they get even stronger! It does, however, work in select cases as you’ve mentioned.
SBRT is highly targeted and precise - surprised your oncologist fears secondary cancers with Lynch Syndrome. However, proton therapy might allay those fears.
Phil

If you start on ADT with both lupron and a second generation hormone therapy, is it just as likely that castrate resistance starts in just a couple of years?

Over time, some tumor cells develop mutations that let them grow despite very low testosterone. This is called castration-resistant prostate cancer (CRPC). The timeline is highly variable—sometimes just a couple of years, sometimes many years.
Impact of combining therapies: Clinical trials (like LATITUDE, STAMPEDE, ARASENS) show that adding a second-generation drug up front delays disease progression and improves survival compared to ADT alone. So while castration resistance can still occur, the time to CRPC is usually significantly prolonged in men who start with combination therapy versus Lupron alone.
But not a guarantee: Some men’s cancers evolve faster than others depending on tumor biology, genetics, disease burden, and other factors. That’s why even with the best modern therapy, doctors monitor PSA, scans, and symptoms closely.