Advise about treatment options, questions when meeting with our dr

Posted by lindask60 @lindask60, Sep 11 7:04am

My husband was diagnosed with progressive prostate cancer. His PSA was 17 the beginning of August after an 8 the end of May. His Gleason score is 9. His PET PSMA test is scheduled for next week, and then the following week we meet with his doctor. I was just wondering if you have any advice as to what treatment options have worked for you or what questions we should be asking him. Thank you in advance.
Linda

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johnernest | @johnernest | Sep 12 7:45am

In reply to @lindask60 "Good question!" + (show)

I did a little research:
Two uncles and a brother with prostate cancer, but not your father—fits with what researchers call familial clustering. The risk of prostate cancer is influenced by both genetic inheritance and environmental/lifestyle factors, and it doesn’t always follow a neat pattern like eye color.
Here’s how it tends to work genetically:
Inherited risk genes: Mutations in genes like BRCA2, HOXB13, ATM, CHEK2, and others can increase prostate cancer risk. These mutations can be passed down from either parent. Having one doesn’t guarantee prostate cancer, but it raises lifetime odds.
Family history effect:
Having a father or brother with prostate cancer more than doubles your risk compared to men without a family history.
The risk is even stronger when multiple relatives are affected, especially if diagnoses happened at younger ages.
Why your father didn’t get it: Genetics aren’t destiny. Even if your family carries a mutation, not everyone who inherits it will develop cancer. That’s called incomplete penetrance—the gene raises risk but doesn’t guarantee disease. Lifestyle, environment, and pure chance also play roles.
Stronger pattern with brothers/uncles: Some research shows prostate cancer risk can be more strongly influenced by brothers and uncles than fathers, possibly because they share more similar environmental exposures and X-chromosome–linked genetic factors.

tjs911 | @tjs911 | Sep 12 8:05am

Best of luck with your husband's treatment. This forum is a great source of info and help.
I was diagnosed 3.5 years ago, Gleason 9, stage 4 with mets to lymph nodes and one spot on pelvic bone. I was started on Firmagon and Abiraterone w/ prednisone. After 2 months (PSA dropped to zero) I received 28 photon radiation treatments w/ several SBRT shots to the pelvic lesion. After 3 years on ADT my PSA continued to be undetectable and I am now on "vacation" from ADT. Labs are due next month .... hoping for good results but recognize that long-term, it's unlikely going to go away.

steveapplebaugh | @steveapplebaugh | Sep 12 9:45am

In reply to @johnernest "No surgery, but starting radiation in about a week. My radiation oncologist thinks he can destroy..." + (show)

I am so sorry to read that your brother transitioned from this physical world because of his prostate cancer. My father did as well at age 65. As you pointed out, treatments are better than earlier and the advances in medical technology are amazing. Be well and stay strong, John....

steveapplebaugh | @steveapplebaugh | Sep 12 9:47am

In reply to @johnernest "I did a little research: Two uncles and a brother with prostate cancer, but not your..." + (show)

Quite informative. Thanks!!!

steveapplebaugh | @steveapplebaugh | Sep 12 10:01am

In reply to @steveapplebaugh "Thank you so very much, Jeff. This is the first I have heard of Prostatecancerpromise.org!" + (show)

Jeff, I went to the site (ProstateCancerPromise.org) immediately after I read your posting about it. Within 5 - 6 minutes, I was registered and my test kit is on the way. I cannot thank you enough for all your help! Steve

johnernest | @johnernest | Sep 12 10:59am

In reply to @tjs911 "Best of luck with your husband's treatment. This forum is a great source of info and..." + (show)

How long were you kept on ADT after radiation?

jeff Marchi | @jeffmarc | Sep 12 11:09am

In reply to @johnernest "Thank you You know my father never had prostate cancer, but his 2 brothers did. I..." + (show)

Genetics are a very strange thing. I got BRCA2 from my mother. Both of her sisters had breast cancer. One of them died of it and so did her daughter. My mother never had a problem, but did pass the BRCA2 gene to me. On top of that, my father died of prostate cancer so between the two of them, I was almost guaranteed to get it, and did at 62. My brother didn’t get BRCA2, but he got prostate cancer at 75 again due to my father doubling his risk of getting it.

So did your two uncles having prostate cancer and your father not having it have an effect on you? Very likely it did.

tjs911 | @tjs911 | Sep 12 11:55am

In reply to @johnernest "How long were you kept on ADT after radiation?" + (show)

I had biopsy on Aug 28, 2022. Started on Degarelix injection and Abiraterone/prednisone orally on Sep 10, 2022. Started Radiation treatment October 22. I continued taking the ADT meds until July 1, 2025 when my Oncologist suggested I take a "vacation." I have been off the ADT for 11 weeks and have experienced no improvement in strength or stamina ... exercising 4-5 days each week.

johnernest | @johnernest | Sep 12 12:06pm

I am not sure which side of my family has the BRCA2, but I suspect it came from my father since his brothers died from PC in their sixties. My younger sister had breast cancer and my older sister died from pancreatic cancer in her seventies. On my mother’s side, she is still alive and her brothers all lived past 100, so I suspect they did not have PC. Back in 2005 -2006 when my brother was diagnosed, I knew nothing above PC, his cancer had spread into his brain and ultimately led to his death in early 2006.
After that, I just thought my brother’s unhealthy life style was the reason he had it. Back in 2013 or so, my mother told me my sister tested negative for BRCA2 and I should get tested, but I ignored it. So in 2024 I end with stage 4, PC. I never thought this would happen to me. But my treatment is going well and I am optimistic!