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Posted 7/9/2020 11:19 AM (GMT 0)
Heading says it all. I'm a little disappointed, I guess you always hope that first test result was somehow wrong.

At least it didn't increase as fast as it did at first reoccurrence after surgery back in 2012.

I'm just numb today. I don't know what to think.
Posted 7/9/2020 1:11 PM (GMT 0)
Sorry to hear that. The number is still very low but the trend is clearly upward. Having been down the same road, one thing worth noting is that you can't estimate doubling times from numbers this small. My MO says changes in numbers below 1.0 or so can be erratic. If you are not currently under the care of an MO, now is a good time to shop for one. I moved my care from my urologist and radiation oncologist to an MO at Dana-Farber when my PSA returned and rose to 0.2.
Jim
Posted 7/9/2020 2:14 PM (GMT 0)
You may still have one shot at a cure. Get your team organized.
Posted 7/9/2020 3:05 PM (GMT 0)
tooyoung,
Dont be disappointed, dont' be numb..celebrate!! That "ultrasensitive" result is is so so low that you should not even worry about it! You have come a long long way on this journey, so dont put a chink in your armor or your outlook now. You have many many years and possibly a cure in your future! keep the faith!
Wings
Posted 7/9/2020 6:11 PM (GMT 0)
Were the pelvic nodes included in the radiation field during your SRT? Has your doctor said anything about the latest PSA rest? How frequently are you testing?
Posted 7/9/2020 6:54 PM (GMT 0)

JNF said...
Were the pelvic nodes included in the radiation field during your SRT? Has your doctor said anything about the latest PSA rest? How frequently are you testing?

Lymph nodes on left side (can't remember the number) were removed at surgery and yes pretty sure covered area with radiation but will need to dig out 8 year old files to be 100% sure. (To be honest, I'm really not ready yet to dive into this yet. My heart's not into the fight yet, kind of thought this was behind me).

Testing was every 6 months, last one was 3 months.
Just got off the phone consult with my Uro. He's staying positive and obviously telling me not to worry. Wants to keep testing at 3 months and get the basic imaging done before making decisions.
He's passing me off (adding to the team) to an Uro/Oncologist. Suppose to be specializing in Urological cancers... Uro says he's more informed on latest treatment options and wants to get his opinion sooner rather than later.

I guess it is wait and see for awhile yet. Not sure when I'll see new guy with covid situation. Trying to arrange something in a month or so.
Posted 7/9/2020 7:48 PM (GMT 0)
Tooyoung,
You're still too young for this. That is a startling Gleason upgrade from your biopsy to the path report. The positive aspect is that you have had a good run since SRT, especially considering your pathology.

I'm guessing your treatment going forward - assuming your PSA continues to increase - will hinge on your PSA doubling time. As pointed out by Bohemond, it will be awhile before an accurate gauge can be made for that. If the doubling were slow, you may not require additional treatment for quite some time - but with your Gleason score some MOs may want act sooner than later.

If treatment is needed, it may turn out to be Lupron plus a choice of Zytiga or Xtandi or Erleada or Chemo.

I hope your PSA retreats and you require nothing, but it's good to be prepared - which you have been doing.

I have the impression that you have taken some deep breaths and that you understand you don't have to be panicked into doing anything at this point in time.

Please let us know how things go.

Good luck!
Posted 7/9/2020 9:15 PM (GMT 0)
How likely could it be that your PSA was low for seven years and then just doubled over three months? I think there's a decent chance that a 0.03 uptick is some sort of outlier. And the number only looks alarming since it's a doubling of your PSA, but I agree that the doubling metric isn't accurate at this low level.

I wouldn't really worry unless there's more of a trend. And if it bugs you enough, I'd consider getting a retest of this most recent score before three months.
Posted 7/9/2020 9:32 PM (GMT 0)
Thanks guys for the support.

Plan is to watch carefully and move on.

It's been a long day. Cracking open a cold one.
Tomorrow is another day.
Posted 7/9/2020 10:46 PM (GMT 0)
Just raised my bourbon on the rocks to you. Tomorrow will be a great day. Best wishes.
Posted 7/10/2020 4:18 AM (GMT 0)

Hello, TooYoung4This ~~~

We both were diagnosed in our 40s, so it's a common thread in our story.

Every uptick in PSA levels causes every fellow anxiety. Any decrease brings us great feelings of encouragement.

I have a health comrade who always says, "I can't BELIEVE how decimals in the hundredths can impact my day!"

It's like being on a little roller coaster ride ... peaks & valleys, rises & falls ...

One thing my oncologist has emphasized to me, over time --- there are bound to be fluctuations, especially when the ultra-sensitive PSA test is used.

He reassures me that fluctuations are inevitable, and to be expected. What he has taught me is to watch for TRENDS, rather than fluctuations.

You're right on top of everything. You're doing your due diligence. You're being proactive. You are being vigilant.

You can't ask anything more of yourself than that.

Rely on the trusted bond and expertise of your doctors. We're all in this together --- and we're standing alongside you.

Keep in touch --- post anytime --- and I just wanted to send a message of support.

With my best,
CYCLONE ~ # Iowa State University
Posted 7/12/2020 12:03 PM (GMT 0)
TooYoung,

Sorry to see your numbers rise... I was in a similar situation, but with a pesky G6... RRP and SRT and then a post SRT rise in PSA after a few year time period... Thought I was going to have to do further treatment options and then the PSA leveled off in the 0.2x range and has stayed there since... Strange, but I can live with it! They now think I may have some benign prostate tissue left from the original RRP... go figure... Hang in there and hope your numbers will level off!
Posted 7/12/2020 4:36 PM (GMT 0)
Pasayten... glad you are doing well and to be honest good to read your post... gives me some hope.

... thoughts from you all are much appreciated. I recognize alot of you from being here years ago. I'm open to any positive comments and suggestions.

(I can manage to find the negative stuff all on my own)
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