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Posted 8/10/2020 5:40 PM (GMT 0)
Djin:
It may be problematic getting an Epstein review of the slides. I would imagine the French might not take to kindly to sending slides to the US for a 2nd opinion. But it's a valid point, I will mention it.

I think I would like to know whether there are metastases (distant or local) before rather than after a RP. What would be the point of a RP if they discovered early spread? It seems to me that would entail the unnecessary and considerable risk of reduced QOL. Or am I missing something?
Posted 8/10/2020 6:33 PM (GMT 0)

Atlantic77 said...
Djin:
It may be problematic getting an Epstein review of the slides. I would imagine the French might not take to kindly to sending slides to the US for a 2nd opinion. But it's a valid point, I will mention it.

I think I would like to know whether there are metastases (distant or local) before rather than after a RP. What would be the point of a RP if they discovered early spread? It seems to me that would entail the unnecessary and considerable risk of reduced QOL. Or am I missing something?

You, the patient, come before "The French," and you can send your biopsy slides youself if they refuse, which I really doubt. I guess if they are really uppity they will ask you for postage ;) this sounds like a non-issue. The only thing would be to arrange shipment between JH and Decipher Bioscience (or another genomics company) if you want both. Do check on tinsurance coverage and the out-of-pocket fee for any genomics test.

My point about bone scans is that given their mediocre sensitivity and their expense, I believe the major uro-radiology associations advise they are not standard of care for G7 (3+4). I don't know what your health insurance will say, but I assume you could always pay for it yourself.

Neither RP nor primary RT will do anything for distant mets, of course, and I doubt the RT field is whole-pelvis for most (3+4). I think an absence of enlarged lymph nodes on your CTs plus a low-risk genomics score could allay fears about mets. Most surgeon's remove just a few pelvic lymph nodes for uncomplicated G7 (3+4) -- and about 50% of surgeon's remove none for G6 men! I wouod let your docs guide you vis-a-vis appropriate imaging.

But what I think isn't of much importance, and I mention all this only as a heads-up. What counts is what you and your docs decide is best for you!

Djin
Posted 8/10/2020 6:56 PM (GMT 0)
Ok thats a good idea, I'll look into sending on the slides for both 2nd opinion and Decipher Test.

Point taken about bone scan sensitivity and the difficulty picking up micro metastases in LN & SV. On the other hand there is always the advantage of possible 'abscopal effect' with RT as opposed to surgery I suppose.
Posted 8/10/2020 7:05 PM (GMT 0)
The Decipher test is very popular for RP tissue, but OncotpyeDx might be more popular for biopsy testing. Have a look at sample reports for both and see which you think is more useful. The information presented differs somewhat. Be sure to look at reports for Decipher Biopsy and not Decipher RP (OncotypeDx is biopsy only).

Tumor tissue is precious to you. Make sure you have all you ducks in a row and if possible stay touch with the person's who will ship/receive, so you can track where your slides are.

Djin
Posted 8/10/2020 7:11 PM (GMT 0)
If for whatever reason, you decide you definitely want a RP, I would then not send your biopsy slides for genomic testing, but instead, wait and having the Decipher test done on your RP tissue.

Decipher Biopsy results, for example, agree with post-RP tissue testing for the same patient (only) about 70% of the time (as is stated in small print on the Decipher Biopsy report itself). The reason is not test inaccuracy, but is the same that explains upgrading of Gleason scores from biopsy to RP: the biopsy samples a tiny amount of prostate tissue, and may not have hit the most serious of your lesions. One chap on another Forum actually got back a low-risk Decipher score on his biopsied tissue and high-risk on the RP tissue!

AFAIK, this possible change in risk goes only in the direction of upgrading (low-> intermediate -> high), in other words, I think it would very rare to test high-risk for mets on your biopsy tissue and low risk afterards on RP tissue. This differs from Gleason score, which can be downgraded from biopsy to RP because a biopsy grade is by convention that of the highest-grade lesion found. When the whole prostate is sampled after a RP, the actual percentages of the different Gleason patterns can be accurately established. Thus the highest-grade lesion found at biopsy is not representative of lesions throughout the prostate about two-thirds of the time, resulting in up- or down-grading.

Your biopsy Gleason score is only an estimate of your "actual" score. For men who choose RT, it is their final one, however.

DJin

Post Edited (DjinTonic) : 8/10/2020 1:50:05 PM (GMT-6)

Posted 8/10/2020 7:41 PM (GMT 0)
Thats some quality information on OncotypeDx & Decipher testing of which I was not aware and it makes a lot of sense - More food for thought!
Posted 8/10/2020 9:39 PM (GMT 0)
"During this year I actually made a trip to a friend in San Jose, CA to avail of legal access to cannabis oil (Rick Simpson oil). Over a 2 month period I made up cannabis oil suppositories in a bid to treat the tumor and see what happens."

"Metabolic Protocol"

In the future, I'd steer very, very far away from anyone who advised such things - neither so-called treatment will put your cancer into remission.

I am glad you found Tall Allens's site, he's a wise man.
Posted 8/11/2020 8:12 PM (GMT 0)
Pratoman:
Yes you are correct in your assumption. The RO I'm seeing has mostly used SBRT in clinical trials up to now. He said he has used it around 100 times and has no significant data yet to prove efficacy apart from the international studies such as PACE-B etc. This relative lack of practitioner experience is a worrying element that I am attempting to factor into my final decision.

Post Edited (Atlantic77) : 8/12/2020 9:56:10 AM (GMT-6)

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