1. < Prostate Cancer
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Newly diagnosed and looking for treatment advice.

Posted by quaddick @quaddick, Sep 23 12:19pm

Hi, everyone. I’m 66 years old and am newly diagnosed with prostate cancer. I currently have no continence or erectile dysfunction, I take no medications, and am healthy otherwise. I haven’t decided on a treatment yet. My cancer is localized to the gland and is low intermediate risk (3+4), so my options range from active surveillance to RP. I’d prefer a one and done treatment, and after lots of online research, I’m leaning towards SBRT. I’d like to avoid ADT if possible, but am worried by my high risk Decipher score of 0.81.
Also, I’ve heard of the Prostox test for predicting urinary problems years down the line from SBRT and IMRT. My radiation oncologist is reluctant to order it for me, because it’s not yet vetted by the FDA. From what I can gather, it’s a legitimate test and Dr. Scholz of the Prostate Cancer Research Institute(many of you are probably aware of PCRI- excellent you tube channel) has positive things to say about it. I am sexually active and still enjoy it, but I am more worried by chronic incontinence as I enjoy lots of outdoor activities.
I would appreciate advice from this community before I make a decision.
Thanks!

My stats:
>PSA 13 bounces up down between 9 and 14 for last few years
>MRI: A 2.2 cm PI-RADS 5 lesion posterior lateral left peripheral zone at the mid gland. An additional
0.6 cm PI-RADS 3 lesion right lateral peripheral zone at the mid gland. No pelvic metastatic disease
findings
>targeted biopsy report: A. Prostate, lesion 1, biopsy: Adenocarcinoma of the prostate, Grade Group 2
(Gleason Score 3+4 = 7/10), in 3 of 3 cores, involving 45% of needle core by volume, Gleason pattern
4 comprises 15% of tumor volume. Perineural invasion is identified. B. Prostate, lesion 2, biopsy:
Adenocarcinoma of the prostate, Grade Group 1 (Gleason Score 3+3 = 6/10), in 1 of 3 cores, involving
5% of needle core by volume. Perineural invasion is not identified.
>Psma pet scan: Mildly tracer avid prostate malignancy. No definite tracer avid nodal or distant
metastases. Clinical stage T1c
>Decipher score .81 high risk

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for quaddick
quaddick | @quaddick | 1 day ago
In reply to @ucfron "@jc76 Prostox is a new AI test that uses your genetics (swab in mouth test) to..." + (show)
Profile picture for WingNut @ucfron

@jc76 Prostox is a new AI test that uses your genetics (swab in mouth test) to determine what your reaction would be to high does SBRT treatment and how it would affect your urinary toxicity. No idea how they can determine this using a swab from your mouth, but mine came back saying I am a bad candidate high does SBRT and that I would have a 95% chance of long term Grade 2 urinary issues. It recommended the longer low dose radiation treatments IMRT which said there was only a 5% chance. This test was ordered by my Mayo Jax Oncologist when he was considering SBRT and it change my path. I am now looking at surgery just to get this out of my body before it is too late.

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@ucfron
Thanks. Sorry to hear about your test results. But better to know ahead of time than wish you'd gotten the test after experiencing the side effects. I'm still waiting to order my prostox test as both my RO and urologist are on vacation.
Best wishes on your surgery.

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Profile picture for rbtsch1951
rbtsch1951 | @rbtsch1951 | 1 day ago
In reply to @quaddick "@rbtsch1951 Thanks. SBRT is sounding the most "attractive" to me also. I'm still waiting to get..." + (show)
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@rbtsch1951
Thanks. SBRT is sounding the most "attractive" to me also. I'm still waiting to get my prostox ordered as both my RO and urologist are on vacation.

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@quaddick it took less than a week for my Prostox test results to return and within a few weeks thereafter all was underway.

And I second the previous commendation that “Patrick Walsh’s Guide to Surviving Prostate Cancer” is a wonderful and reliable resource for all men dealing with a prostate cancer diagnosis and increasing awareness for those not yet diagnosed as well.
https://a.co/d/ddaSYi2

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Profile picture for jc76
jc76 | @jc76 | 1 day ago
In reply to @ucfron "@jc76 Prostox is a new AI test that uses your genetics (swab in mouth test) to..." + (show)
Profile picture for WingNut @ucfron

@jc76 Prostox is a new AI test that uses your genetics (swab in mouth test) to determine what your reaction would be to high does SBRT treatment and how it would affect your urinary toxicity. No idea how they can determine this using a swab from your mouth, but mine came back saying I am a bad candidate high does SBRT and that I would have a 95% chance of long term Grade 2 urinary issues. It recommended the longer low dose radiation treatments IMRT which said there was only a 5% chance. This test was ordered by my Mayo Jax Oncologist when he was considering SBRT and it change my path. I am now looking at surgery just to get this out of my body before it is too late.

Jump to this post

@ucfron
Wow! I have mentioned several times that even since I had my treatments reading about new tests and treatments.

I agree with you how that can do that from a mouth swap but that is genetics and A.I, these days. I see you go to Mayo Jacksonville also. Back in 2023 my Mayo Jax R/Os never mentioned that test so must be fairly new.

Did you ever consider going to UFHPTI in Jacksonville? It offers proton radiation versus photon at Mayo Jax. The radiation beam can be controlled not to go pass the prostate or specific area being treated. I was a patient at Mayo Jax like you and met with R/Os several times but Mayo Jax only has photon radiation now until new cancer center is built and on line which will have proton radiation.

There is a lot of discussion about low dose and high does side affects. I think your post reflects about this test confirms the concern some R/Os, urologists and PCPs have about the side affects of high dose versus low dose. My UFHPTI R/O did not like high dose. This was based on what he was seeing with his patients so was real time information. My Mayo PCP said the exact thing of what he was seeing with high dose and low dose. I think getting feedback from doctors treating patients far more real time information is important.

Good luck on your decision. I hope everything is fine with what ever you choose. I wish that test was available when I was diagnosed. I would have liked to have known that information even though my UFHPTI R/O was insistant to doing low dose versus long term based on his personal finding he was seeing with his patients.

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Profile picture for quaddick
quaddick | @quaddick | 15 hours ago
In reply to @rbtsch1951 "@quaddick it took less than a week for my Prostox test results to return and within..." + (show)
Profile picture for rbtsch1951 @rbtsch1951

@quaddick it took less than a week for my Prostox test results to return and within a few weeks thereafter all was underway.

And I second the previous commendation that “Patrick Walsh’s Guide to Surviving Prostate Cancer” is a wonderful and reliable resource for all men dealing with a prostate cancer diagnosis and increasing awareness for those not yet diagnosed as well.
https://a.co/d/ddaSYi2

Jump to this post

@rbtsch1951
The book arrived this morning. Thanks for the tip.

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