Decipher score

I believe so the cancer center I'm going to is ohsu and is #1 in Oregon for
cancer treatment.

@ginger38314
Not sure you have talked to her, but OHSU has a fantastic GU oncologist doctor Eleni Efstathiou.

I know a few people that have used her and all of them liked her a lot.

Sorry to hear about your situation. Last year, I found myself in a very similar situation. My biopsy showed Gleason 3+4 cancer in only 1 of 18 cores, but my Decipher score was 0.75. So, although the cancer was very low volume, the genomic testing suggested more aggressive biology.

I initially considered radiation because I was attracted to the idea of avoiding surgery and its potential side effects. However, I already had significant urinary symptoms from an enlarged prostate and overactive bladder. After discussing both options with my surgeon and a radiation oncologist, they confirmed my concern that radiation could potentially worsen those pre-existing urinary problems. That ultimately tipped the balance in favor of surgery for me.

My final pathology, unfortunately, showed pT3b disease with seminal vesicle invasion (SVI), extracapsular extension (EPE), and other adverse features.

At the one-year mark, four consecutive PSA tests have remained undetectable, which is very encouraging. However, given my adverse pathology and genomic risk, I remain on BCR watch, with a plan to consider ultra-early or early salvage treatment if and when my PSA reaches a predetermined threshold, such as 0.1 or 0.2.

In the meantime, I’ve also adopted a strict “anti-cancer” nutrition plan in the hope of reducing the risk of recurrence or, at a minimum, slowing disease progression.

Although my PSA results have been very encouraging so far, I have unfortunately developed significant incontinence as a side effect of the surgery. It has not improved despite being diligent with pelvic floor exercises.

Sorry to hear about your situation. Last year, I found myself in a very similar situation. My biopsy showed Gleason 3+4 cancer in only 1 of 18 cores, but my Decipher score was 0.75. So, although the cancer was very low volume, the genomic testing suggested more aggressive biology.

I initially considered radiation because I was attracted to the idea of avoiding surgery and its potential side effects. However, I already had significant urinary symptoms from an enlarged prostate and overactive bladder. After discussing both options with my surgeon and a radiation oncologist, they confirmed my concern that radiation could potentially worsen those pre-existing urinary problems. That ultimately tipped the balance in favor of surgery for me.

My final pathology, unfortunately, showed pT3b disease with seminal vesicle invasion (SVI), extracapsular extension (EPE), and other adverse features.

At the one-year mark, four consecutive PSA tests have remained undetectable, which is very encouraging. However, given my adverse pathology and genomic risk, I remain on BCR watch, with a plan to consider ultra-early or early salvage treatment if and when my PSA reaches a predetermined threshold, such as 0.1 or 0.2.

In the meantime, I’ve also adopted a strict “anti-cancer” nutrition plan in the hope of reducing the risk of recurrence or, at a minimum, slowing disease progression.

Although my PSA results have been very encouraging so far, I have unfortunately developed significant incontinence as a side effect of the surgery. It has not improved despite being diligent with pelvic floor exercises.

Sorry to hear about your situation. Last year, I found myself in a very similar situation. My biopsy showed Gleason 3+4 cancer in only 1 of 18 cores, but my Decipher score was 0.75. So, although the cancer was very low volume, the genomic testing suggested more aggressive biology.

I initially considered radiation because I was attracted to the idea of avoiding surgery and its potential side effects. However, I already had significant urinary symptoms from an enlarged prostate and overactive bladder. After discussing both options with my surgeon and a radiation oncologist, they confirmed my concern that radiation could potentially worsen those pre-existing urinary problems. That ultimately tipped the balance in favor of surgery for me.

My final pathology, unfortunately, showed pT3b disease with seminal vesicle invasion (SVI), extracapsular extension (EPE), and other adverse features.

At the one-year mark, four consecutive PSA tests have remained undetectable, which is very encouraging. However, given my adverse pathology and genomic risk, I remain on BCR watch, with a plan to consider ultra-early or early salvage treatment if and when my PSA reaches a predetermined threshold, such as 0.1 or 0.2.

In the meantime, I’ve also adopted a strict “anti-cancer” nutrition plan in the hope of reducing the risk of recurrence or, at a minimum, slowing disease progression.

Although my PSA results have been very encouraging so far, I have unfortunately developed significant incontinence as a side effect of the surgery. It has not improved despite being diligent with pelvic floor exercises.

Did you do a pet scan?

Also how long did it take you to get finally treated? It's been going on 9
months since my elevated psa of 5 after retest now since high decipher
score I feel more urgency to treat it.

Hi @soli,

Thank you for sharing your story, and I am sorry for what you've been going
through.

I am currently waiting for a PET scan and am heavily leaning toward SBRT (5
treatments) along with 6 months of Orgovyx to offset my Decipher score. My
MRI showed no invasion, but I am very concerned about post-surgery
outcomes, especially since a high Decipher score doubles the risk of
adverse pathology to roughly 40%. I just turned 69 and currently have no
urinary issues, so hearing your experience is very helpful.

Best regards,
Scott

@ginger38314
Your pet scan will find two golden retrievers?

If you do start taking orgovyx it will stop any cancer you have from growing and spreading. That’s why it makes sense to do it if it’s going to be a while before you have treatment and you’ve got high risk. ADT can actually shrink the metastasis.