My son’s Testosterone results:

[Cactus297]

Last week I posted my son’s three month PSA test and learned that it was the same as last time <0.10 and now I have the matching testosterone results of 7.0. How good or bad is that? I am unfamiliar with testosterone numbers after all the medicines he’s taken, and radiation.

I don’t know what the previous testosterone results were. He’s 51 years old. Diagnosed age 49 August 2022. Had RP last October 2022 and has been on Lupron plus generic Zytiga and prednisone since December 2022/ January 2023. He also finished up six weeks of IMRT middle of March 2022.

Two months after the surgery his PSA was 22. The PC had spread to some of the pelvic lymph nodes but PSMA Pet Scan showed no further Mets, but the PC is Tertiary 5 so high risk.

Thank you everybody for your help and input.

[Tall_Allen]

Great! Exactly what he wants it to be.

[Cactus297 in reply to Tall_Allen]

Whew 😰! Thanks Tall_Allen! He had not previously discussed the testosterone with his doctor so he couldn’t give me a precise answer. They were focusing more on the PSA, another year of his meds and Lupron and he might be looking at stopping to see how things go. Do you think that’s a good idea because he is Tertiary 5?

I think it means SOC and not a vacation from the meds because vacations from the meds aren’t supposed to be that successful.

[Tall_Allen in reply to Cactus297]

No vacations!

[Cactus297 in reply to Tall_Allen]

Yes but he will have been on ADT for two years…generic Zytiga, prednisone and Lupron plus 6 weeks of IMRT finishing radiation mid March this year.

His PSA had jumped to 22 in just 2 months after RP surgery October 24, 2022. We also found out that he was tertiary five .They put his case before the board in January so I guess it was a bit unusual.

I just want to understand what you’re saying do you mean he should never stop ADT? Is he one of those patients? Is he that high risk?

I remember you’re saying that the new PSMA pet scan does not catch really small cancers and after the radiation he came back OK with no Mets anywhere.But mets could be lurking and if he stops the ADT, they could multiply. He’s 51 and started this journey at 49 in August of last year.

Thanks so much for your input.

[Tall_Allen in reply to Cactus297]

His ADT is 3 years and Zytiga is 2 years - no vacations before that.

[Cactus297 in reply to Tall_Allen]

If my memory is right I think you posted a link to a study and /or SOC about this. If that’s correct, could you please re-post it so I could send it to my son? I would like to discuss it with him.

Thank you again.

[Tall_Allen in reply to Cactus297]

ncbi.nlm.nih.gov/pmc/articl...

[Cactus297 in reply to Tall_Allen]

Thanks! And I would like him to reach out and have a visit with Dr McKay before making his choice . She was there for the entire journey. His new doctor just reading the case history isn’t quite the same.

I do agree with you that 3 years on the Lupron is necessary… maybe even longer after he talks to Dr McKay. The study you posted will give him the straight facts.The decision is still a year away, but I want him to be well prepared to make an informed choice. It’s his life not his new doctor’s.

Thanks again!

[j-o-h-n]

MoonRocket said it............Keep the faith Mom.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/29/2023 10:57 PM DST

[Cactus297 in reply to j-o-h-n]

Thanks so much John!🙏🏻

[Cactus297 in reply to j-o-h-n]

Yes John. I just want to my son to make a wise choice about stopping ADT. It’s still a year away before he can ever consider it but when he went to his new doctor this past month, she did tell him that. Thanks for all your support. I hope you’re doing well too.

[Cactus297]

But Tertiary is more aggressive?

Thanks for the reply and encouragement.

[Cactus297]

I just read your bio and it says you’re a three he started out as a three but now he’s a four because of the cancer in the pelvic lymph nodes that was treated with radiation last March. Wouldn’t that make a difference in the treatment protocol?

Thanks again!

[Cactus297]

When he was first diagnosed they told him he was a 3 and when his PSA jumped to 22 two months after RP, they told him he was a 4 even though it was regionalized in the pelvic lymph nodes without Mets beyond. I believe localized is less serious (not spread as far) as his. Yours is probably localized? Was yours contained in the prostate? Or did it spread outside the prostate?

[Cactus297]

You and my son are quite similar. How long do you to take HT? also age is a factor… my son is 51 so he’s young and pc is in our family. My older brother has it and also my former husband’s brother has it. Both have been treated and are still living. My brother I think contracted it in his mid to late late 50s or early 60s and t in his early 80s now and my brother-in-law contracted it I believe in his late 70s and is about 80.

Thanks for sharing your story.

[j-o-h-n]

I've seen so many negative posts here regarding "stop/start" treatments.... so of course he should do more research.....He can research H.U. History files... You see I'm a glass half empty guy and everything must be proven to me. Give your son (nameless) my regards and tell him to always listen to his Mom (and to kiss and hug her too).........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/31/2023 5:57 PM DST

[Cactus297 in reply to j-o-h-n]

So you mean men whose PC has become worse after stopping and starting that is to say taking a break from ADT? Like finding Mets in other parts of the body they didn’t have before they stopped? I know Tall Allen does not feel that vacations are very successful and I think you’re saying the same thing.

Right now I would call what he’s dealt with Regional because it’s only been in the pelvic area. The doctor showed him what they looked like and my son said they looked like diamonds . But with the tertiary five they looked dispersed. One doctor told him he would definitely have to be checked regularly for the rest of his life. But just like everybody else we don’t know if all of those diamonds were killed with the radiation or if they’re just under control with the ADT. And Tall_Allen posted to one participant that PSMA pet scans don’t show the really small Mets. So we could be looking at the tip of the iceberg just waiting to spread and it’s very aggressive.

What bothers me is that I read that you have a 99% chance of living five years if it doesn’t metastasize, but if it metastasizes you have a 37% chance of making it to five years. That’s a horrible statistic.

The team and his doctor in California started him on very aggressive treatment. I’m not sure he should ever go off. He’s doing well with ADT but I think part of it of course is putting on a happy face and just toughing it out and he’s hiking and has gone vegan for the most part so he has a healthy diet.

I am going tell him about what I’ve learned and show him Tall Allen’s study. He’s a year away from any changes so there’s still time to give it thought …as always I walk a slippery slope because it’s my son not a husband or an SO.

I haven’t disclosed his name because he hasn’t given me permission and I haven’t asked!

He knows I’m on the forum and he knows about Tall Allen but I tried to keep things pretty low-key so I don’t invade his privacy. I also try to stay away from the topic when we’re talking and let him bring it up if he wants to, but this is something that I’m going to have to discuss with him. I hope he’ll go back to his original doctor in California for another opinion.

Do you know if you stay on ADT indefinitely don’t you become resistant to the medicines? They don’t work anymore?

Sorry everybody for the long post.

[Cactus297]

So you’re about the same age but no prostate cancer in the family. …that’s positive. your situations are definitely similar though.

[j-o-h-n]

Don't be concerned, it's not a long post.....Only reason I mentioned his name is because posting here sometimes seems too antiseptic (but that's just me). I can do some research (takes some time) and dig up the "plus and minuses" of ADT vacations....Remember I said you remind me of my Mother...... but one big difference, and maybe because she was from the old country. Come hell and high water she was going to say it, regardless if it meant disturbing me or not. You seem like you're walking on eggs.....with your son and his condition. My Mom would have cared less....Hopefully he loves you and whatever you say cannot hurt him in any way. Just my opinion. I know it's not my business it's just the relationship I and my siblings had to do with my Mom. I would think that over time those little cancer cells do get immune to the meds we take, therefore we take new ones and hope (pray) for the best. Anyway I will try to get you history of H.U. postings which may highlight "vacations"...... Stay well cause you're a lovely caring Mom.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/31/2023 8:32 PM DST

[Cactus297]

Thanks John, I would really appreciate those HU postings. I do somewhat walk on eggs because it’s my son‘s life and he has the right to lead it and make the decisions it. I raised him to be independent and independent he is. Basically I want to help but not be a PITN that does not respect boundaries.

Not sure how to research the HU postings for the “vacations”. Perhaps you just type in ADT vacations.I will give that a try too.

Thanks!

[Cactus297]

Just reread your reply…. didn’t the SOC change in 2022 with the Stampede Study to three years ADT and two years of generic Zytiga?

Thanks !

[Cactus297]

You did exactly what the Stampede Trial recommended in 2019. It didn’t change to 3 years ADT till 2022. Do you think you would have completed 3 years ADT instead of 2 years if they had changed the guidelines sooner?

Or would you have taken a vacation at 2 years? That’s pretty much what my son will be faced with because he will complete ADT at the end of next year 2 years , but the guidelines have changed to 3 years. He doesn’t have the same risk factor as you but he’s high risk too because he’s tertiary 5.

This is copy and paste it from the 2022 Stampede results. My sons MO is recommending two years also and I’m am sending this to him too.I think he should be doing at least three years with his high risk situation.

“Abiraterone for 2 years should now be considered a standard treatment option in addition to 3-year ADT for newly diagnosed non-metastatic prostate cancer with high-risk features.”

All the best to all of us who face this nasty cancer together…strength in knowledge and numbers!