I need advice to help make a decision.......

Posted by chipe @chipe, Nov 18 3:25pm

Just to set the background: RARP on September 16. Cancer was intraductal and they found at least 1 lymph node with PC in it. My 6 week PSA was undetectable.

Went to the radiation oncologist this morning. He gave me the choice to start ADT/Radiation (2 years ADT, 7 1/2 weeks of M-F radiation treatments) in January or wait until my PSA starts to go up. His data shows that either option is acceptable with outcomes the same. He also said there is a very slight chance I am cancer-free, but he really is not convinced and is leaning heavily toward PC lurking in me somewhere. He said it is 6 to one, half-dozen to the other.

My thoughts:
1. Both the surgeon and the oncologist are pretty sure that I am NOT cancer-free but right now the PSA is good. The oncologist said that could change with my 12-week blood test.
2. I am leaning heavily toward starting in January. Why wait for the PSA to go up? That means we are allowing the cancer to get large enough to impact PSA levels. To me, that is not acceptable. I don't want the cancer to get a foothold or grow at all.
3. I am a proactive person, not a reactive person. Having the ADT/Radiation therapy sooner rather than later is proactive, IMHO.
4. I am 71 now. As many of us here know, getting older takes its toll on our bodies. I am in good shape, very active, and not overweight. Today, I just cut down three trees, so I'm doing okay. Why would I wait a few years to start when my body is weaker due to the natural impact of aging? I know I can handle it now, but in five years, who knows?
5. He talked about the side effects: fatigue, loss of muscle mass, hot flashes. He said the radiation can also impact bowel movements and urinary frequency. Again, these are also, unfortunately, symptoms of the natural aging process (maybe not the hot flashes).
6. Is the ADT/Radiation regimen that bad that I should avoid it as long as I can?

Yes, I am leaning toward the "do it now" choice, but I want to make an informed decision. I have until mid-December to make the call.

So, if it were YOU, what direction might you take?

Thank you all!!! 🙂

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@jeffmarc

Actually, castrate resistant doesn’t mean your Cancer doesn’t need testosterone anymore. Many people that are castrate resistant get Zytiga which reduces your testosterone even more and can work for years to keep your cancer at bay.

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Hi @jeffmarc . I didn't say it no longer needs testosterone. What I said it doesn't need YOUR testosterone. The way my oncologist explained it was that the cancer evolves to a point where it makes its own small amount. ZYTIGA® works by interrupting the androgen-making process at an important step. It inhibits androgen at 3 sources—the testes, the adrenal glands, AND the tumor itself. This is the difference from other ADT therapies.

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@desertsky46

Hi @jeffmarc . I didn't say it no longer needs testosterone. What I said it doesn't need YOUR testosterone. The way my oncologist explained it was that the cancer evolves to a point where it makes its own small amount. ZYTIGA® works by interrupting the androgen-making process at an important step. It inhibits androgen at 3 sources—the testes, the adrenal glands, AND the tumor itself. This is the difference from other ADT therapies.

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That's a good point. Abiraterone acetate (Zytiga) isn't ADT at all; it's a first-generation reception inhibitor (from the mid-1990s) meant to work together with ADT or physical castration to inhibit testosterone uptake by cancer cells, as you mention.

The second-generation -lutamides (Apalutamide, Enzalutamide, etc), which have come out over the past 5 years or so, do the same thing more effectively, but they're not suitable for all cases, which is why oncologists still often recommend Zytiga.

For mCRPC, I think @jeffmarc mentioned that some oncologists like to sequence, starting with Zytiga and then escalating to a -lutamide when Zytiga stops working, but he can fill in the details there; for mCSPC, the TITAN study showed that starting with Apalutamide+ADT immediately is highly effective (that's what they did for me right at diagnosis in 2021, and my PSA is still undetectable, < 0.01, as we enter 2025).

Disclaimer: not a medical professional, etc etc

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It's also worth mentioning that because Zytiga is older, it's out of patent and cheap generic versions are available, driving down the price. The -lutamides can be very expensive, and some insurance plans in the U.S. might not want to cover them if they decide that Zytiga (or generic equivalent) is "good enough" for a specific prostate-cancer situation.

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I will share my case and offer what I choose to do.
Had Gleason 6 in 7 core and one upgraded upon second opinion to G7 so after a year on AS I had SBRT
First thing my doctor did was stopping my testosterone replacement. My T levels are rock bottom hence my need for TRT
I was a basket case and eventually found a clinic and went back to testosterone. Yeah yeah, I heard about "Gas on fire" with PCA and testosterone but I happen to live in my skin and could not deal with the emotional toll. My T had dropped to 25 and I was a sad crying emotional wreck so that was why I found a clinic and BTW withheld my PCA diagnosis out of fear. I did alert my oncologist and PCP
So yes I might have taken a chance but it was my choice.
I cannot give advice as you know but I will add the PCA is usually very slow growing and second a undetectable PSA is a great sign!
I know what I would do in your case but that is your choice

Glen

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@gbear1953

I will share my case and offer what I choose to do.
Had Gleason 6 in 7 core and one upgraded upon second opinion to G7 so after a year on AS I had SBRT
First thing my doctor did was stopping my testosterone replacement. My T levels are rock bottom hence my need for TRT
I was a basket case and eventually found a clinic and went back to testosterone. Yeah yeah, I heard about "Gas on fire" with PCA and testosterone but I happen to live in my skin and could not deal with the emotional toll. My T had dropped to 25 and I was a sad crying emotional wreck so that was why I found a clinic and BTW withheld my PCA diagnosis out of fear. I did alert my oncologist and PCP
So yes I might have taken a chance but it was my choice.
I cannot give advice as you know but I will add the PCA is usually very slow growing and second a undetectable PSA is a great sign!
I know what I would do in your case but that is your choice

Glen

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I'm on forever meds, it's in my bones and for right now I won't be stopping my meds. Trying to say I can understand your decision. We may all have the same cancer but we are all different. It's your life and you decide how you will live it. I wish you the best on your journey. Best to all.

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Age 72. 2017 Stage 4. Gleason 9. I had a very similar conversation with surgeon and radiation oncologist. Given same choices. Went to lunch with wife and came back to them with choice of surgery, then radiation starting 5 months later for 90 sessions. PSA was undetectable after surgery and remained so until last year. Now detectable and creeping slightly for two years. Back to 6-months checks. Watching carefully and contemplating next steps. It’s been a good 7 years since diagnosis. Just hoping to keep going, whatever this brings.

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@tomrosenwinkel

Age 72. 2017 Stage 4. Gleason 9. I had a very similar conversation with surgeon and radiation oncologist. Given same choices. Went to lunch with wife and came back to them with choice of surgery, then radiation starting 5 months later for 90 sessions. PSA was undetectable after surgery and remained so until last year. Now detectable and creeping slightly for two years. Back to 6-months checks. Watching carefully and contemplating next steps. It’s been a good 7 years since diagnosis. Just hoping to keep going, whatever this brings.

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Are you on ADT? That is the first step to get your PSA down, With the Gleason nine they also might want to give you a second level Drug like Zytiga or one of the lutamides.

If it above .2 you should be doing something, by .6 your doctor should have put you on at least ADT. That would drop your PSA back down to undetectable probably.

Have you had a PSMA PET scan? If your PSA is above .6 you should ask for one. It is the standard According to the NCCN for finding cancer metastasis

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@jeffmarc

Are you on ADT? That is the first step to get your PSA down, With the Gleason nine they also might want to give you a second level Drug like Zytiga or one of the lutamides.

If it above .2 you should be doing something, by .6 your doctor should have put you on at least ADT. That would drop your PSA back down to undetectable probably.

Have you had a PSMA PET scan? If your PSA is above .6 you should ask for one. It is the standard According to the NCCN for finding cancer metastasis

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Thanks for the insight. The PSA remained undetectable for five years, tested annually. It shows up last year and slightly higher this year in October. But not above the .2 threshold, Not on any meds. Scheduled another check in 6 months to determine rate of change. If above . 2 a PET Scan will be done. That’s all I know at this point. So we wait.

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@tomrosenwinkel

Thanks for the insight. The PSA remained undetectable for five years, tested annually. It shows up last year and slightly higher this year in October. But not above the .2 threshold, Not on any meds. Scheduled another check in 6 months to determine rate of change. If above . 2 a PET Scan will be done. That’s all I know at this point. So we wait.

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90 sessions?? That seems very wrong. Even the old timer RO’s only do 39; and the newest recommendation is 25 treatments in most cases.
Please get some clarity on this before you commit to anything.

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