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Saipan decision thread

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Posted 2/1/2018 4:29 AM (GMT 0)
Time for me to stop crashing other people’s threads with thoughts about whether/where/how/with whom to do early salvage RT. Thank you everyone who has been sending me good juju. Special thanks to garyi and pratoman for the GFYPH lunch in SoFla and much sage advice.
Forgive the length of this post, but I’m gonna try to cram everything in.
Here’s where things stand: All 3 ROs I’ve consulted advise doing RT+6m Lupron. Met with surgeon Dr Patel today. Not surprisingly, he favors waiting, giving my body more time to recover, esp. ED-wise before dousing my libido with Lupron, doesn’t believe I would lose a meaningful beat on a cure by waiting for a more sustained upward trend. But he agreed that with G8 and EPE it’s reasonable to expect needing salvage at some point and if I want to go ahead with it now he can respect that choice.
I had Axumin PET scan yesterday, but given my low PSA it would be shocking if it showed mets. Biagioli seemed to think it was a waste of time/money, but Abramowitz wants it and insurance covers it so I went ahead. Don’t have the results yet. Also had a blood draw for a fresh PSA. I know, don’t switch labs — but I really want to see what a different lab/equipment comes up with 3 weeks after my last test. (Florida Hospital uses Quest and LabCorp, I’m not sure which one does their uPSA. Guam uses a Siemens Dimension.)
Will have 3T MRI tomorrow. A CT scan in November, when I was having hip/groin pain, showed either a lymphocele or an inflamed lymph node (possible PCa activity?). All the docs, including Patel, want a good look at what if anything is/was going on there. Currently, I’m asymptomatic. Could influence whether I do WPRT as Abramowitz recommends.
The big excitement tomorrow is ICI training from my RN at Patel’s office. I think they’re not playing fair — trying to influence me to delay salvage by giving me a woody to bring home to the wife next week.
The only firm;) decision I’ve made is to fly back to Saipan as scheduled Feb 3 in time for my wife’s 50th birthday Feb 6. Then I’ll look for a little down time in order to consider my options and make a decision I’m fully comfortable with. If I decide to do RT in Florida, I might get the Lupron shot in Guam beforehand and look to start tx with Biagioli or Abramowitz in early March.
Posted 2/1/2018 8:43 AM (GMT 0)
A brilliant plan! I didn't want to say anything after you were so excited about your last meeting, but the "availability heuristic" can be a troublesome source of cognitive bias - we usually act on the last positive experience. Not that I think he would be at all a bad choice. But I very much like your plan of sitting on it for a little while before deciding.
Posted 2/1/2018 10:01 AM (GMT 0)
Sounds like you are logically attacking this and good to see a bit of humor. Hang in there. What did you think of Dr B? Denis
Posted 2/1/2018 10:58 AM (GMT 0)

Subdenis said...
What did you think of Dr B?


I would absolutely trust my care to him. Love at first sight. That’s why TA’s so happy to hear I’m going to take a deep breath before committing — he knows I was ready to elope.
BTW, again Patel’s group impressed me. I was welcomed like the prodigal son, and that didn’t change when i told them I might run off with an RO. Slipped me more Viagra samples (maybe I’m not supposed to say that). The scheduler spent a half hour calling other docs and imaging centers to rearrange my appointments so as to fit me in for ICI training at the last minute. Great office.
Posted 2/1/2018 12:06 PM (GMT 0)
Sounds like a great plan, Saipan. You're fortunate to have a care team that you like and trust and works hard for you - means a lot. I wish you all the best going forward.

What is ICI? I checked the list of abbreviations and didn't see it. Injections?

Jeff
Posted 2/1/2018 12:31 PM (GMT 0)
Glad to see full analsys, Saipan.
My experience with my surgeon is, sadly, different. Good job with surgery, but when my psa persisted at 6 weeks, disproving his pre-surgery assertion that it was all coming from the prodtate, he scheduled a 12-week psa then cancelled the appointment to see me at 12 weeks (without explanation or informing me —appointment just disappeared from my patient page so I called to make sure it was cancelled but again no explanation).
Had psa test, small increase, but heard nothing for six days until I contacted them by email to ask if is time for me to see an RO. Heard back from nurse that this is fine with him and they will set up an appointment.
I assume the RO will set up further tests, incuding another psa to calculate trajectory.
Appears the surgeon regards me as a failure and doesn’t want to see me again.
But at least they say they will get me in with Michael Zelefsky at MSKCC.
Posted 2/1/2018 1:00 PM (GMT 0)
Jeff--
ICI is intracavernosal Injection--Trimix and such.
Posted 2/1/2018 1:15 PM (GMT 0)
Progressing,
Sorry to hear about the bad experience. I think Patel's attitude is essentially the same as your surgeon's, he's reluctant to call the surgery a failure. But he and his office maybe deal with it better.
Posted 2/1/2018 1:29 PM (GMT 0)
Ah, ok. Thanks for clarifying. Maybe we should add that one to the abbreviation list smile.

I've been using Trimix for about a month. It works great for me. Still looking forward to hopefully achieving natural erections again someday, but for now I call Trimix my happy juice smile.

Jeff
Posted 2/1/2018 1:53 PM (GMT 0)
SP, your process is as sound and methodical as any I've seen here and I'm sure it will serve you well.
Lunch was great, hope we can do it again .

I'm looking forward to following your progress as I may be right behind you.
Posted 2/1/2018 2:40 PM (GMT 0)
I had RALP March of 2015 and my urologist wanted me to wait until fall 2015 to begin SRT to give the pelvic bed healing time. Did you get a genome test like Decipher?
Posted 2/1/2018 4:30 PM (GMT 0)

John_TX said...
Did you get a genome test like Decipher?


No, but sounds like a good idea. TA and others: your thoughts?
Posted 2/1/2018 4:35 PM (GMT 0)
SP: The best to you. It sounds like you have a good plan.

May all beings be well and always free from animosity.

Roger
Posted 2/2/2018 12:31 AM (GMT 0)

Pratoman said...


I'm looking forward to following your progress as I may be right behind you.

eyes Good Lord shakehead

SP: Good plan, Descipher would be a VERY good step, my surgeon while quite helpful kinda didn’t want to review a failed surgery...even as I didn’t blame him, AND you owe me a call.
Posted 2/2/2018 5:30 AM (GMT 0)
Saipan- Sounds like you have a good team in place and ready to go when your ready. I think it shows that when a person becomes his own advocate along with a good medical team good things come out of it. I meant with my team today and asked for a bone density scan since I am going to be on lupron for a while they said you had one already and I said no don't remember having one and after searching thru my history found out that I didn't get one. They said that everybody that went on long term lupron got one don't know how I got missed. So even at a hospital like mayo things get missed so that is why you gotta learn all you can and stay on top of things with your medical team.

Larry
Posted 2/2/2018 8:24 PM (GMT 0)
Good for you Larry — underscores and capitalizes the need to be our own advocates.
Posted 2/2/2018 10:44 PM (GMT 0)
Wednesday’s PSA Florida Hospital came in at 0.10. So the Jan 10 Guam PSA of 0.09 is reliable. Handwriting’s on the wall.
Posted 2/5/2018 3:43 PM (GMT 0)

John_TX said...
Did you get a genome test like Decipher?


Just found out my post-RP Decipher score was .39, the high end of the low-risk range. How, if at all, should that figure into my decision whether to start RT+HT now?
Turns out Dr Patel sent for the Decipher soon after the surgery — apparently he routinely does it for G8 and higher — but never mentioned it to me. After John TX suggested it last week, I called Patel’s office to request one. I got a callback from the PA just now. She told me they already had sent for one five months ago, and read me the result. I’m puzzled why it wasn’t shared with me until I asked about it — especially since if you’re advocating against early salvage, as Patel is, being at lower risk for 5 an 10 year metastasis would seem a good piece of evidence. Counter-arguments are: (1) At my age, 61, how much risk should I accept? I’d much prefer avoiding metastasis altogether and would accept some risk of SE setbacks now in exchange for not having to do chemo in my seventies. (2) I’m showing a 3-month doubling time (10/2017 <.05, 1/8/2018 .09, 1/31/2018 .10), indicating that I may be getting the short end of the Decipher stick.
Thoughts?
Posted 2/5/2018 5:51 PM (GMT 0)
1. CALL Decipher yourself, their customer service is excellent, ask questions, and request your GRID report. It has lots of interesting information.

2. Have Decipher send a complete report to your Orlando RO. Patel is out of the picture at this point.

3. At your low PSA readings, doubling time calculations mean little, if anything.

4. The only "short end of the stick" you think you're getting, is from your overthinking your relatively good situation. Probably a result of your looooong flight home. nono

5. RELAX, my friend smile

Post Edited (garyi) : 2/5/2018 11:23:01 AM (GMT-7)

Posted 2/5/2018 7:43 PM (GMT 0)
That's a problem with genomic tests - they mostly do not change one's risk profile because most men are somewhere in the middle. And a 5 or 10 year risk of metastases may not mean that much to a 60 yo man (it takes a median of 8 years for mets to become detectable after prostatectomy failure). One new feature of Decipher is their PORTOS score, which if validated, may show the probability that SRT will be successful.

So, lacking any clear direction from Decipher, you have to fall back on the other risk factors that put you at high risk for progression (GS8, EPE and PSA=0.10).
Posted 2/5/2018 8:28 PM (GMT 0)
Thanks, Allen and Gary.
Allen, I found an entertaining and enlightening 2-post thread in Nov 2016 titled “Decipher score, now hopefully PORTOS,” where JayMot and Tomson express their frustration at the limitations of Decipher scoring for post-RP decision making.
Gary, I’ll see first if Patel’s office will send me the grid. Decipher’s 1-888 customer service number isn’t available from Saipan. I take your point about doubling time, and jet lag.
Posted 2/7/2018 12:46 AM (GMT 0)
I've decided to do RT on Guam with Dr Ko. Will shut down this thread and post details on the ADT/SRT from now on.
Posted 2/7/2018 1:11 AM (GMT 0)
Good luck SP. You sure have done your homework. Which at least made it possible for us to meet.
Glad you are going into this with as educated a decision as possible.
Posted 2/7/2018 1:15 AM (GMT 0)
It seems to be the most convenient, and, as I recall, he was offering a pretty good dose level on state-of-the-art equipment.
Posted 2/7/2018 1:37 AM (GMT 0)
SP, you’ve looked at the options, made the decision, have confidence in Dr. Ko, and have been an example to others who face similar choices.
All the best going forward, and looking forward to following your experience on the ADT/SRT thread.
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