RO! MO! It's off to work I go! - Advanced Prostate...

Advanced Prostate Cancer

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RO! MO! It's off to work I go!

farmanerd profile image
8 Replies

Due to irreconcilable differences, I separated from my prostate last December. Now it's time to work out the final details to try to ensure that I don't end up with custody of any of her children.

Historical information and pathology data is in my profile.

Because of positive surgical margins and influenced by my extreme Decipher score of 0.94,

I currently plan on having EBRT to the prostatic bed starting in March/April. I have a meeting with my MO to discuss whether or not I might benefit from other treatment. May be premature for other than ART, but couple unknown LN status and cribriform architecture with the prior two factors and it just seems that BCR is unavoidable in the future and I would like to delay it as long as possible. What should I be considering/discussing?

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farmanerd
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Tall_Allen profile image
Tall_Allen

That's very funny. Here's a list of questions you may wish to discuss:

pcnrv.blogspot.com/2017/12/...

farmanerd profile image
farmanerd in reply to Tall_Allen

Having supported siblings through divorces, I thought that it was an apt analogy -- with a twist. Thanks for the info and for your blog. I'll be searching through it for genomic (Decipher) driven therapies that are being explored.

Tall_Allen profile image
Tall_Allen in reply to farmanerd

I may have mentioned it here and there. it is appropriate when one is on the fence about SRT. There was a blog about PORTOS from the same company (Genome Dx):

pcnrv.blogspot.com/2016/11/...

Blackpatch profile image
Blackpatch

TA's questions are a great starting place for your RO discussions, for sure.

I had RRP in Dec 2017, -ve margins but SVI, ECE and PNI, 7= 4+3 with 5% 5, and a Decipher of 0.91 - so not too different to you in many respects, although I'd surely like to swap for your pT3a!! No one has anything good to say about SVI.

My overriding piece of advice would be to start getting monthly ultra-sensative PSAs - they're standard in Australia and from eyeballing variability of the data I think the inherent noise in the measurements is around +/- 0.002, provided you stick with one lab.

This gives you two things - an early read on your PSA doubling time (PSADT) - there's a good study correlating micro PSADT with PSDAT at higher PSAs apparently more common in the US, and the bottom line is that if you see a bad trend (and I surely trust that you don't) you can be pretty sure it will stay that way - the converse is not necessarily true, but if you're in the s#*t, this will give you a few months of bow wave to do some thinking.

The second thing it can give is "proof" that you will experienece BCR, since it's pretty well universally agreed that any reading over 0.03 means you will eventually cross the offical line of 0.2.... again, you get more time to think.

I was undetectable for five months post RP then got a first reading of 0.024. A Ln plot over successive months confirmed BCR was going to happen and that my PSADT was between 3 and 4 months - uncomfortably fast.

In Sep 18 (ten months post-surgery) I went to the UK and started on CareOncology's protocol of metformin/statins and alternating months of doxcyclin and mbendazole - PSA was around 0.048 at the time, and my aim was to keep it comfortably below 0.1, which is where it seems to be generally agreed that eSRT gets the same outcome as ART. Shortly after this I organised the Decipher testing that put me at the 97th percentile of their database for cell proliferation rate, with 47% 5 yr met and 23% ten year PCa mortality... but the silver lining was that I am at 87% on PORTOS, so one of the lucky 25% who should respond well to radiation.

Almost a year to the day after RRP, I had a second PSMA PET scan (one just before the RRP had shown only a very angry prostate) - my PSA was 0.1, and nothing was detected... So in February I commenced on Zolodex and Zytiga + Pred for two years, and started eSRT which will finish in two weeks, covering the fossa and the pelvic lymph nodes (albeit at only ca. 68Gy since they take the view that there's not much there to kill). My last PSA, on the morning of the ADT shot, was the first to show a dip - down by a miserly 0.03 on the week prior, so pretty much just noise.... but LSQ fitting the last few months of data sort-of suggests the CareOncology protocol (which I plan on continuing for the next two years) might have slowed the PSADT to a bit over 4 months.... or it might have been slowing anyway as the absolute size of whatever is there increased... who knows?

So... get the microPSA and work out how much time you've got, then get on your bike!!

I really don't know if any of the above has done or will do me any good, but it has given me some sense of control... besides, t'm told those nice Jannsen people need the money!! The oncologists I have consulted keep telling me second-gen ADT is pretty much just whistling in the dark at this stage... but they all say it's what they'd do if they had PCa...

All the very best, do stay in touch...

Stuart

farmanerd profile image
farmanerd in reply to Blackpatch

If I am committed to having ART to clean up the positive margins, is a sensitive PSA test immediately needed? It would give a more exact starting data point to judge my personal benefit gained from the therapy and could also influence my choice of additional therapies -- if any. I do agree that going forward a sensitive PSA test is necessary to monitor for BCR.

Having received the biopsy results and feeling relief that it was only two cores of twelve and a low volume of GS7=3+4, I had time to research what "cribriform architecture, approaching 50%" meant (nature.com/articles/modpath.... Not pleased with what I discovered and then even less pleased to learn of the Decipher biopsy results a week later. When my URO showed me the results, I think that my mouth dropped open and I slumped back in the chair. Decipher biopsy gave risk in percent likelihood at RP: High Grade Disease (primary Gleason 4 or 5) 56.5%, 5-Year Metastasis 53.9% and 10-Year PCA Specific Mortality of 25.6%. No AS for me! The absurd Decipher score seemed to indicate that there was more going on than the biopsy indicated, so I easily decided upon RARP. Now I'm prostateless, upgraded to a GS7(4+3) and have a few adverse features, but at least no SVI and no LVI. I do wonder how did I end up with BNI when the tumors were in right and left apex?

PLND was planned, but they were inaccessible due to a single massive piece of mesh that was placed during a bilateral inguinal hernia repair about 15 years ago -- what I called my bionic gut. URO stated that there was excessive chance of complications if he went after the LNs and from my research, it seemed like it was only going to be a 50/50 chance from the start.

Back to Decipher . . . I think that my GRID results are a bit different from yours even though our scores are similar. My ADT response is 29, post-op radiation response is 61 and docetaxel sensitivity is 93. Yes, these are stated as Research Use Only and not clinically validated or for use in clinical decision-making, but it seems to state that I will most likely become castrate resistant, radiation will kill off some and that docetaxel might wipe out quite a few. I did see the footnote that states that drug response scores are derived from in vitro screening and are not validated in clinical trials. There is this CT: clinicaltrials.gov/ct2/show..., but I don't meet the inclusion criteria. Decipher also says that I'm over-expressed in PCA3, VEGFR2 and CCND1 -- more alphabet soup to consume.

Time to get the nearby Comprehensive Cancer Center involved to see what creative solutions they may have to resolve my situation. Still hoping for a cure -- my youngest starts high school next year and I have two daughters to eventually walk down the aisle -- my three nerds that I am growing little bits at at time. Finding my direction through this mess.

Best wishes for the path that you have chosen.

j-o-h-n profile image
j-o-h-n

Good Recommendations here. Would you please be kind enough to tell us where you're located, your age, treatment center, Doctor(s) name(s). This info helps us help you and helps us. If you respond please post on another day (and don't respond to me). If you don't wish to respond then it is what it is.

BTW uspstf = United States Preventive Services Task Force?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/26/2019 5:44 PM EST

farmanerd profile image
farmanerd in reply to j-o-h-n

My info that I wish to share is in my profile. Will be getting a second opinion at a nearby Comprehensive Cancer Center regarding further treatment.

Yes: USPSTF = United States Preventive Services Task Force. My former PCP and I agreed at the time (2013) that ceasing PSA testing seemed reasonable. Now I'm here and I feel quite differently about the value of yearly PSA testing and DREs.

j-o-h-n profile image
j-o-h-n

Okay, thank you. Second opinion is always good to have. Well many of us never had a Psa test or DRE before we actually were diagnosed, so you're in good company.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/27/2019 6:12 PM EST

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