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New Member Seeking Advice re Treatment

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Posted 1/15/2016 2:53 PM (GMT -5)
Hello NewDay, Ken and Tall Allen

We've come to the same conclusion, need more diagnostic details on my actual condition.
1. My NJ urologist had suggested the Prolaris test but, since I was enroute to FL, that did not happen. I will pursue that and NewDay's Oncoptye DX test and get one of them done.
2. In a long telephone discussion with a Radiation Oncologist, here in Sarasota, he proposed having a third analysis of my biopsy slides as a tie-breaker for either 3+3 or 3+4. He suggested a Dr. Boswick and I'm going to get this done.

We also discussed Color Doppler Ultrasound, which he preferred, vs. 3T MP MRI - both designed to detect cancer outside the prostate shell. I'm leaning toward 3T MP MRI and working on getting a referral to have that done.

Have to admit part of the telephone discussion was, to me at least, a sales pitch as to why they were the best, why they were so successful, etc. When I stated that I would consider AS, if we had more evidence of low risk, he was underwhelmed, suggesting I should still consider treatment. His, of course.
Posted 1/16/2016 10:17 AM (GMT -5)
For what you know, your situation is defiantly a challenge for a "logical" direction. Your approach to move on the available data vs emotion will serve you well.

Tall Allen's comment on the expense $$$$ of cancer DNA test's vs the data returned is a good point. My cancer clinic (USMD) sponsors Oncoptye DX testing, they are very restrictive on sponsoring tests that have real merit. The urologist didn't make the suggestion for the test, I made a point of asking for it. For myself, needed more data to make a AS decision - Living with Cancer.

That said, from a risk position, knowing what you have (Type) would be my main concern. I think the veteran members would agree, your current condition doesn't fall under the "travel" umbrella yet. Based on the current info, way to early. Guys please weigh in here.

Having a detailed full look inside the prostate (MRI/Ultrasound) is always good for scope of intrusion, the battle field at hand. There appears to be an on-going debate on which technology is "the" best for the money/data. My 3T MRI did give me some peace of mine for finding "significant" lesions in the prostate, the one I had turned out to be HGPIN, not cancer. Remember, these scans are only catching "significant" cancer tumors, not cellular level cancer.

Again, your immediate concern is what "Type" of cancer you have. Although you'll never get a absolute confirmation, the current gene/biomarkers science will give you a risk factor ranking. Maybe that thumbs Up/Down factor you need for AS vs Aggressive treatment.

Post Edited (NewDay) : 1/16/2016 8:37:32 AM (GMT-7)

Posted 1/28/2016 9:28 AM (GMT -5)
Update on my status

While in Sarasota FL for two months I needed a radiation oncologist to discuss my case. Met with a doctor at the Moffitt Cancer Center in Tampa, FL. He was excellent, a lengthy discussion of current status and options. He gave me a T1c stage; earlier I had been told T2a or b. He thought I would qualify for Active Surveillance or treatment, the choice was mine. (He was surprised no prior doctor had mentioned active surveillance.)
We agreed to pursue more diagnostics:
Prolaris - his copy of my first biopsy analysis indicated this test was done in early January; I had never been informed. I spent several hours tracking down the facts and now have a Prolaris score of 1.9 and 10 year mortality risk of 2%.
Third analysis of biopsy slides: slides were delivered to Moffitt Cancer Center yesterday, should have their analysis in a few days.
3T mp MRI - The Moffitt doctor gave me a referral to get this here in Sarasota and not drive up to Tampa and back. I've contacted them once but need to resolve the insurance issue (I'm on Medicare Advantage from a PA provider; they have accepted all of my doctors so far.)

While researching my doctor options I did pursue the Dattali Program here in Sarasota, completing two long telephone interviews. Clearly a well organized process with a solid following but, for me, a bit too aggressive in applying their solution, which includes radiation, then seeds, then more radiation. They were underwhelmed when I suggested Active Surveillance if we collected more diagnostics to show I was low risk.

Thanks to all the contributors here who motivated me to pursue all of my options.

Cheers!
Rob
Posted 1/28/2016 11:08 AM (GMT -5)
FWIW...I like the guy at Moffitt already.

I hope the MRI doesn't "muddy the waters" for you. Sometimes these things can raise more questions than they answer. But, it sounds like you're in the hands of a reasonable doctor.

I've always felt (another big fwiw) that if pathologists disagree on G6 or G7...that can mean "it's close". One reads it one way and the other reads it another way (even if there's a tie breaker) that it may be possible to just split the difference....with more weight leaning one way or the other...given the context of the given information, and from whom.

If the MRI does show a fairly suspicious area (possible 4's) ...and its biopsied, that tissue can be sent to Dr. Epstien and tested for PTEN and ERG markers. It's not a test they commonly do, but Dr. Epstien will do it (at least he said he would in my case, at my Radiologist's request). There's a recent study by JH that these two markers are very good at discerning between the course of any given grade 4 cancer cell. (I.e...outcomes down the road).

This takes the cooperation of a urologist whose willing to work. (Something I did not have). It's also time consuming and requires effort ( something else that can add stress).

All of this may be a bit premature. But something to keep in the back of your mind. (Your urologist may be unfamiliar with this study, but a good prostate radiologist will be all over it).

Good luck. So far so good. (And no surgery for you. j/k).
Posted 2/1/2016 5:47 PM (GMT -5)
Welcome, Rob.

I have a friend who's 74. He was diagnosed 5 years ago at age 69 and chose radiation. Today his cancer is almost undetectable. You appear to be within the margins to still consider all your options, including active surveillance.

One more thing, my friend told me that "surgeons want to do surgery. That's how they get paid."
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