Just the beginning : Hi, I’m John, 7... - Advanced Prostate...

Advanced Prostate Cancer

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Just the beginning

Johnfromsandiego profile image
6 Replies

Hi, I’m John, 73 yrs old, G7(3+4), T2a, no mets, PSA 12. Dx Feb 2017, AS since. I’m learning about all of my options while following AS. My PCa is not very aggressive, but I’m not sure what, if any, action would be more beneficial than debilitating. I’m considering Proton Therapy, but holding off as long as my PCa remains contained. I’m here to learn, as it seems this group is further down the road in this journey and has much to offer. Thank you for sharing all your experiences.

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Tall_Allen profile image
Tall_Allen

Welcome, John-

Unless you have a known reason why your PSA is elevated (e.g., prostatitis or BPH), you have two significant risk factors (GS 3+4) and PSA, that elevates your risk level. I suggest you do two things:

(1) send your biopsy slides to Dr. Epstein's lab at Johns Hopkins for a second opinion. His word is gold in the prostate pathology world. He also routinely gives the % pattern 4, which is important for you to know.

(2) Ask for a multiparametric MRI - targeted biopsy at UCSD. This is a necessary step in being accepted to most reputable AS programs.

As for treatments, I don't think protons is a good choice because of high cost in money and time. it seems to have high rates of sexual toxicity. So far, it has tested no better than IMRT (which is also far too many treatments) in spite of the theoretical Bragg's Peak framework. Better radiation choices are SBRT (Don Fuller) or HDR brachytherapy monotherapy (at UCLA or Cedars-Sinai). For surgery, Dr Ahlering at UC Irvine gets good reviews from his patients.

Johnfromsandiego profile image
Johnfromsandiego in reply to Tall_Allen

Hi, TA; thanks for the welcome and your suggestions. I’ve done the following:

(1) my first TRUS biopsy in 2017 showed 2 G6 cores. At that time my PSA was 10.3. A year later, an mpMRI showed a lesion in the anterior region, of moderate suspicion. A new biopsy included that area (not touched by the earlier biopsy), and showed 2 cores of 3+4. One had <4% 4, the other 40% 4.

(2) I got a Prolaris score for the 40% 4, that indicated “somewhat aggressive” PCa, with a 10-year survival expectancy of 95%.

(3) I’ve met with Dr. Rossi regarding Proton Therapy, and Dr. London regarding SBRT (CyberKnife). I’ve chosen Proton for my if/when treatment, after weighing the following:

a) Insurance covers both;

b) Proton outcomes are at least equal to those of SBRT, frequently better (slightly);

c) SBRT likely includes near-term side effects that Proton does not;

d) however, Proton is 28 sessions.while SBRT is 5.

So, weighing those, I’m leaning to Proton once I feel like AS is no longer appropriate. Quarterly PSA and 6-month mpMRI will lead me down the road.

I’m also considering CBD, or 4-MU. Any thoughts on those?

- John

Johnfromsandiego profile image
Johnfromsandiego in reply to Johnfromsandiego

Forgot to mention - 2nd MRI done this month, showed no change in lesion, still no evidence of Lymphnode invasion or other mets. Confirmed continuation of AS.

Tall_Allen profile image
Tall_Allen in reply to Johnfromsandiego

Here's what I know about proton:

pcnrv.blogspot.com/2016/08/...

pcnrv.blogspot.com/2016/08/...

Those supplements are in addition to , not instead of, right?

Johnfromsandiego profile image
Johnfromsandiego in reply to Tall_Allen

Considering supplements while on AS. Dr. Rossi is from Loma Linda, and is a pioneer in pencil beam Proton Therapy, an advancement over that used in the Florida study, which is from 2006-2010.

Tall_Allen profile image
Tall_Allen in reply to Johnfromsandiego

Dr Rossi should publish his results. That is the problem with protons - lots of talk, but few published findings in peer-reviewed journals.

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