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Update - Almost 1 year Post Ralp

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Posted 1/27/2020 8:32 PM (GMT 0)
Blocked by not agreeing to a referral needed by my insurance. I guess I can wait to April and see if a stay below .1
Posted 1/27/2020 8:50 PM (GMT 0)
so your insurance is blocking? That's even worse.
Posted 1/27/2020 8:53 PM (GMT 0)
No it's my Uro not agreeing to the referral.
Posted 1/27/2020 10:06 PM (GMT 0)
Ok. Fire the Uro. Or give me the number and I will call & ream him/her out. I thought most major institutions allow for self referral. Good luck working through this b.s.
Posted 1/28/2020 12:49 AM (GMT 0)
Could you get your regular doctor to refer you since they are usually the gatekeeper in managed care? The actual treatment usually requires some special approval and justification but getting an opinion on treatment with a specialist visit should be a low bar to hurdle. Just a thought or hire GoBucks as your advocate.
Posted 1/28/2020 1:46 AM (GMT 0)
I am shocked you were not referred for adjuvant. Unless you have an insurance constraint, you do not need a referral. Call an RO ASAP. You got one shot left cowboy.

Post Edited (Duck2) : 1/27/2020 6:49:08 PM (GMT-7)

Posted 1/28/2020 4:06 AM (GMT 0)
I haven't had RT but did RP at Mayo Clinic and self referred to their from my local URO who did my biopsy. Called my insurance to see if they covered Mayo Clinic and they said yes. Mayo Clinic checked for me also. So would think you could self refer especially to a Center of Excellence.
Posted 1/28/2020 6:02 AM (GMT 0)
a study to look at with respect to uPSA, BCR and SRT

Very early salvage radiation has up to fourfold better outcomes and saves lives

https://prostatecancerinfolink.net/2016/09/21/very-early-salvage-radiation-has-up-to-fourfold-better-outcomes-and-saves-lives/
Posted 2/6/2020 6:35 PM (GMT 0)
Quick update. I did get a referral to Dana Farber Boston and saw Dr. Roberts MO yesterday, exactly one year from my RO. You guys were right, it seems the cancer is still there. We are working on a plan now, but it looks like radiation and hormone therapy. Yuck! Thanks for the advice. Never let your surgeon be you advocate!
Posted 2/6/2020 6:58 PM (GMT 0)
Fran, Ok, great, you have a plan. Yeah, it stinks, but you're doing the right thing. We often say in here that once you have your stitches out, your surgeon is no longer your 'go-to' doctor. For the regular follow-ups, many PCP's will handle that--or they may prefer a urologist. But, we still need to monitor our own numbers, and if we have a concern, get it answered.
Posted 2/6/2020 7:05 PM (GMT 0)
Hi Fran -- glad you are taking action. Just as a reminder to others, I do not think you were well served by switching PSA tests:

3/11/19 - PSA 0.01
7/1/19 - PSA <.06
10/14/19 PSA .06
01/09/20 - PSA .08 Starting to worry.

By switching to a less sensitive test on 7/1/19, the <0.06 reading gave you no information as to whether you PSA was rising -- it could have been anything between 0.01 and 0.06. Looking back and interpolating, it was probably around 0.04. Perhaps seeing that followed by 0.06 would have called more attention to a rising trend.

Best of luck on your next chapter to beat the beast!

Djin
Posted 2/6/2020 7:12 PM (GMT 0)
I am and have been getting my PSA tests done at Dana Farber since my first on post RALP. Heading there right now to get a new baseline for radiation and ADT.
Posted 2/6/2020 7:21 PM (GMT 0)

FranPro said...
I am and have been getting my PSA tests done at Dana Farber since my first on post RALP. Heading there right now to get a new baseline for radiation and ADT.

Then either you have a typo in your signature, or they switched tests on you. A test that shows <0.06 can detect only down to 0.06 and could not have given you your 0.01 result.

Djin

Post Edited (DjinTonic) : 2/6/2020 12:26:18 PM (GMT-7)

Posted 2/7/2020 5:56 PM (GMT 0)
Update. I got a referral from primary care and saw a MO at Dana Farber Boston 2 days ago. He wants to start radiation and hormone therapy ASAP. Meeting with the RO at my local Dana Farber a week from Monday.Did a new PSA yesterday at my same lab and the PSA is 0.09 up from .08 in January.
Posted 2/7/2020 6:03 PM (GMT 0)
The PSA retest is good standard of care. In your case it confirmed that the previous result was correct, and this 30-day higher value is evidence of a still-rising trend rather than a plateau.

Best of luck on this new treatment phase!

Djin
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