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Posted 8/5/2016 7:52 PM (GMT 0)
Also I finally got my urologist to write an order for an ultra sensitive PSA today. I'll be going to the lab on Tuesday. This should tell to the thousandths 0.XXX
-Bob
Posted 8/6/2016 3:09 AM (GMT 0)
Oh??...Oh??...Thats the best news in this whole thread!!
Posted 8/10/2016 2:54 PM (GMT 0)
Update: went for ultra sensitive PSA test yesterday and awaiting the results. Also just received approval from my HMO to go to Moffitt Cancer Center in Tampa next Tuesday and a years worth of follow up so that's a relief. Really hoping they will have some good help there. We shall see but I believe I will be in good hands and out of Hicksville.
Best Regards,
Bob
Posted 8/12/2016 1:22 PM (GMT 0)
Got my labs in this morning. Ultra sensitive PSA is 0.149. PSA Free is 0.01. % Free = 10.0. My GP called this a.m. And reviewed bone scan results with me. One small met Confirmed on interior pubic ramus. moffitt appt on Tuesday and RO on Thursday. Don't know what the % free of 10.0 even means? Any words of wisdom would be appreciated.
Thank you,
Bob
Posted 8/12/2016 5:13 PM (GMT 0)
Id get a second opinion on the met...that a pretty low psa for a met...and yet the pubic bone is an odd place for an old injury... cant remember if this is the hicksville thread...if so I would find medico with a bunch of knowledge on scans...and have them read it...I do know it took a lot for the medicos to even get you a ultra sensitive test...I personally would not trust their cohorts if at the same medical business..
cynical...yep..does it make me wrong?...maybe... my sense is... it is not a met...I have zip to back that up... just a sense...from this whole thread...good luck
Posted 8/12/2016 9:14 PM (GMT 0)
I agree with the earlier poster. Get that scan looked at by another oncologist.

You have some critical decisions to make and you need to have the best information to base them on.
Posted 8/13/2016 12:12 AM (GMT 0)
Thanks. I sure hope you're right. This is the Hisksville thread. I'm headed to Moffitt Cancer Center in Tampa on Tuesday and will have films in hand. They are ranked #18 in the country so I'm trusting their expertise and hoping for the best. I know stranger things have happened. Will let y'all know how that goes.
Bob
Posted 8/16/2016 3:23 PM (GMT 0)
Update from Moffitt: Just met with the MO and he is not convinced the bone scan reading is correct with the bone met in the pelvis. He is recommending SRT to start ASAP but with my low PSA he isn't buying the whole bone met reading. He said he can't be sure one way or the other but wants to see the PSA drop with RT. Other than a referral to a geneticist for future tx options I'll be seeing the RO this Thursday.
Great news as far as I'm concerned!
Posted 8/16/2016 4:01 PM (GMT 0)
Amen to that news RC. Bolo-de-Knolo hit the nail on the head-o
Posted 8/17/2016 12:06 AM (GMT 0)
rcroller - my surgical pathology similar to yours, minus your positive margin. One year out PSA started rising. I gathered dietary advice from here and other sources - tried it as "so much easier than HT plus SRT". PSA has gone to undetectable on the last test. I don't know if there is any relationship between diet and reversal of rising PSA. Happy to share what I've done - my email available in profile.

Best to you and most of all hope the Moffitt questioning of the positive bone scan bears out.

Wilderness.
Posted 8/21/2016 8:46 PM (GMT 0)
Visited the RO and will be testing over the next two days to determine viability for RT. Still concern over PET bone scan results and a little cardiac issue that has arisen. Is nothing simple? Echo and stress test tomorrow. MRI and CT Tuesday. If the MRI and CT don't raise further concerns regarding the bone met issue, meaning that the bone met is ruled out to the best of their ability, RT will begin the following week. 38 sessions five days a week. If MRI/CT indicates accuracy of bone met then RT will not be pursued and I'll be returning to Moffitt to see what can be offered to slow the beast. I never thought I'd say I'm hoping for RT but I'm hoping for RT. RO says odds of RT success should be in the 50-70% range. Hoping to get lucky. Will keep you posted as the weeks test results unfold.
Posted 8/22/2016 4:15 PM (GMT 0)
Just to clarify...you are being treated in all that you mentioned on last post At Moffit and have little contact with old team....Iit is good they are taking a second look at "met" Its not the first time a member was diagnosed with a met that wasn't.... I would hope to see more of a rise in psa before RT...but it seems the die is cast...You will be fine long term....GoodLuck
Posted 8/22/2016 6:04 PM (GMT 0)
So for clarification, Moffitt referred me back to a radiologist in Tallahassee. We have a fairly new cancer center here and no, not part of the old team. A new team but local. Moffitt recommended going straight to radiation once the bone met can be further ruled out via MRI scheduled for tomorrow. The RO is in agreement with Moffitt both about the met not likely being a met due to the low PSA and the sooner SRT is started the better the likelihood of success. Both cited a recent study indicating higher SRT success with PSA scores 0.2 and lower. Moffitt actually said they would have recommended ART post RP but that ship has sailed. Thanks for the well wishes and will let you know how this all plays out.
Bob R.
Posted 8/22/2016 9:03 PM (GMT 0)
sounds like you are in good hands...take care
Posted 8/30/2016 7:15 PM (GMT 0)
After some frustrating delays due to a broken MRI machine with subsequent rescheduling, I have finally heard from the ROs office and apparently the "bone met" was not a met but an 8mm nodule on the prostate bed. I will see the RO next Tuesday and get more details. For now the nurse wanted to tell me that the Dr felt this was good news and he was confident that he could knock it out with radiation treatment. I've been mapped and am scheduled to begin the first of 38 sessions next Wednesday. On the one hand I'm glad they've ruled out the met and can have SRT. On the other, I'm a little nervous since I've probably read way too much on the subject, side effects, etc. One day at a time and hopeful for a good outcome. I'd love nothing more than to have my membership in the zero club reinstated.
Bob R.
Posted 8/30/2016 7:33 PM (GMT 0)
Sweet news rcroller. Good luck with SRT.
Wilderness
Posted 8/30/2016 7:47 PM (GMT 0)
I don't understand how a bone scan could mistake an 8mm nodule on the prostate bed for a bone met. But anyway, it sounds like good news and I'm hopeful that the SRT will get it.
Posted 8/30/2016 7:55 PM (GMT 0)
I don't get that either Tall Allen but that's what they told me. I'll get more detail when I have my appointment with the RO and can ask questions. Nonetheless I'm feeling more hopefull. Thanks.
Posted 8/31/2016 3:17 AM (GMT 0)
I just completed session 15 of 33 IMRT treatments and haven't had any side effects whatsoever yet.
Posted 9/7/2016 1:18 PM (GMT 0)
Met with the RO yesterday and got some clarification on the "bone met" vs nodule issue. The fact is they are two independent issues that the nurse failed to effectively communicate. The nodule is 8mm in the neck of the bladder. The RO says it's in the field he will radiate anyway so no point in doing a biopsy as the treatment recommendation won't change. As for the bone met, he "thinks" it's a boney island but can't rule out a met. Not what I really wanted to hear but it is what it is. He said a needle biopsy would be too difficult and not entirely reliable due to the small size and hitting it exactly. So, two separate issues and he's recommending we just move ahead with radiation as planned and "knock it out". Only time will tell regarding success or the reality of whether the met is really a met or not. So today begins 38 IMRT treatments @ 68.4 Gy. Hoping I get lucky but based upon that discussion I can't say I'm feeling very lucky at all. Guess I just have to get used to Not knowing, suck it up, and hope for the best.
Posted 9/7/2016 3:17 PM (GMT 0)
Rc I am really sorry for your news, my brother had pc surgery about 12years ago and he was never in the 0 club, so he had radiation and still has a low reading. He is comfortable with the low reading and his docs say that pc won't kill him. Good luck to you bro
Posted 9/7/2016 9:41 PM (GMT 0)
rcroller-
That makes a lot of sense. I hope it is just a boney island - that sort of thing definitely happens, and the fact that it shows up while your PSA is so low argues against it being cancerous. Good luck with the SRT - I hope it is curative for you.
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