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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Profile picture for johnernest @johnernest

I have stage 4 PC, Gleason 9 at biopsy last August
I was put on ADT, immediately with an injection of Firmagon and oral Nubeqa. Essentially this reduces your testosterone to almost zero and cancer starts to shrink and die off since it lives off testosterone . I had a PSMA PET scan about 2 weeks later. Cancer had spread to one lymph node and 4 places in my pelvis.
Going on ADT pretty much stops the cancer from further growth, essentially putting it to sleep. Currently my PSA is undetectable from a high of 62 when I was first diagnosed. All of my cancer areas had significantly reduced in size after the first 6 months of ADT treatment. Keep in mind that everyone’s cancer is unique and treatment protocols will vary per individual case.
I was lucky and responded very well to ADT, but some guys don’t. Your docs should also order a genetic test to identify the cancer’s makeup and for the BRCA 2 gene. This helps guide treatment down the road.
Hope this information helps a bit.

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Did you have any surgery or radiation? Or just the ADT?

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Profile picture for ucla2025 @ucla2025

Did you have any surgery or radiation? Or just the ADT?

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No surgery, but starting radiation in about a week. My radiation oncologist thinks he can destroy the remaining cancer and if my PSA stays undetectable for 6 months after, then maybe I can be taken off ADT. Of course this is all a “maybe” at this point because I have the BRCA2 gene mutation and my cancer is very high risk. I am just taking this one day at a time and staying active and try to enjoy every day. I am 72 years old, my older brother had the same exact disease back in 2006, he was 62 then, by the time he had symptoms and went to the doctor it was too late for effective treatments and he passed in about 6 months. I believe the treatments today are much better and life expectancy with the disease has increased.

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Profile picture for johnernest @johnernest

No surgery, but starting radiation in about a week. My radiation oncologist thinks he can destroy the remaining cancer and if my PSA stays undetectable for 6 months after, then maybe I can be taken off ADT. Of course this is all a “maybe” at this point because I have the BRCA2 gene mutation and my cancer is very high risk. I am just taking this one day at a time and staying active and try to enjoy every day. I am 72 years old, my older brother had the same exact disease back in 2006, he was 62 then, by the time he had symptoms and went to the doctor it was too late for effective treatments and he passed in about 6 months. I believe the treatments today are much better and life expectancy with the disease has increased.

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I have BRCA2 And I’ve been on ADT for nine years. I’ve had four reoccurrences because the BRCA does not allow you to get cured. I’ve had surgery 3 1/2 years later my PSA started rising and I’ve had salvage radiation, 2 1/2 years later the PSA came back up and I moved to Lupron. Nine years later, 2 more reoccurrences, I’m just waiting until the drugs I’m on stop working. Then I move to a PARP Inhibitor. Hopefully, that will work.

I’m one of the easiest Cases because I started as a 4+3 Gleason. I know many other people with BRCA2 that have had much more aggressive cases, And shorter lives.. Make sure if you stop ADT that you get tested monthly. I got it at 62 and I’m now 77. My brother got it at 75, My father died of prostate cancer so that that’s why he has it. He doesn’t have BRCA2 So he got it a lot later in life.

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Profile picture for jeff Marchi @jeffmarc

Getting both of those tests may make sense, but it’s a little too early to get a somatic test. As long as you live in the United States, you can get the hereditary test for free at

Prostatecancerpromise.org

Don’t check the box that you want your doctor involved or they won’t send you the kit until after talking to your doctor.

Takes about three weeks for the results and A genetic counselor will call you to discuss the results. You will also get a printout of the results.

The somatic test can tell you, whether or not the cancer itself has created genetic anomalies. If they have, you can get treatment for some of the things found. They can use blood or tissue for the somatic test.

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Thank you so very much, Jeff. This is the first I have heard of Prostatecancerpromise.org!

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Profile picture for jeff Marchi @jeffmarc

I am not sure what you mean by laser treatment, I suppose it is one of the focal treatments that are available. If you have a high Gleason score, they normally don’t want to use those types of treatments. This is something you need to discuss with the doctors that are treating you. Everyone is different when it comes to these kind of treatments.

Normally, with a high Gleason, they want to do surgery or radiation.

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Thank you so much.

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Profile picture for jeff Marchi @jeffmarc

I have BRCA2 And I’ve been on ADT for nine years. I’ve had four reoccurrences because the BRCA does not allow you to get cured. I’ve had surgery 3 1/2 years later my PSA started rising and I’ve had salvage radiation, 2 1/2 years later the PSA came back up and I moved to Lupron. Nine years later, 2 more reoccurrences, I’m just waiting until the drugs I’m on stop working. Then I move to a PARP Inhibitor. Hopefully, that will work.

I’m one of the easiest Cases because I started as a 4+3 Gleason. I know many other people with BRCA2 that have had much more aggressive cases, And shorter lives.. Make sure if you stop ADT that you get tested monthly. I got it at 62 and I’m now 77. My brother got it at 75, My father died of prostate cancer so that that’s why he has it. He doesn’t have BRCA2 So he got it a lot later in life.

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Thank you for that information and I’m sorry about your dad.

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Profile picture for johnernest @johnernest

No surgery, but starting radiation in about a week. My radiation oncologist thinks he can destroy the remaining cancer and if my PSA stays undetectable for 6 months after, then maybe I can be taken off ADT. Of course this is all a “maybe” at this point because I have the BRCA2 gene mutation and my cancer is very high risk. I am just taking this one day at a time and staying active and try to enjoy every day. I am 72 years old, my older brother had the same exact disease back in 2006, he was 62 then, by the time he had symptoms and went to the doctor it was too late for effective treatments and he passed in about 6 months. I believe the treatments today are much better and life expectancy with the disease has increased.

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Thanks for your reply. My husband is also very high risk but no BRCA gene. However his grandfather, father and his uncle all died with cancer so something is going on there. His prostatectomy “failed” after it was done in June so now he’s on ADT and will have another pmsa pet scan and then on to radiation. Wishing you well with your upcoming treatments.

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Profile picture for johnernest @johnernest

No surgery, but starting radiation in about a week. My radiation oncologist thinks he can destroy the remaining cancer and if my PSA stays undetectable for 6 months after, then maybe I can be taken off ADT. Of course this is all a “maybe” at this point because I have the BRCA2 gene mutation and my cancer is very high risk. I am just taking this one day at a time and staying active and try to enjoy every day. I am 72 years old, my older brother had the same exact disease back in 2006, he was 62 then, by the time he had symptoms and went to the doctor it was too late for effective treatments and he passed in about 6 months. I believe the treatments today are much better and life expectancy with the disease has increased.

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Thank you for responding. My husband is 73, and both his parents died from cancer. I’m sorry about your brother.

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Profile picture for ucla2025 @ucla2025

Thanks for your reply. My husband is also very high risk but no BRCA gene. However his grandfather, father and his uncle all died with cancer so something is going on there. His prostatectomy “failed” after it was done in June so now he’s on ADT and will have another pmsa pet scan and then on to radiation. Wishing you well with your upcoming treatments.

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Thank you
You know my father never had prostate cancer, but his 2 brothers did. I wonder how this works out genetically.

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Profile picture for johnernest @johnernest

Thank you
You know my father never had prostate cancer, but his 2 brothers did. I wonder how this works out genetically.

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Good question!

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