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Hello and ....I'm Frick'n Scared

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Posted 11/4/2018 9:06 PM (GMT -5)
Dennie, what exactly did your Uro say about the .26? Are you sure it wasn’t .026?

.2 is standard definition of biochemical recurrence. So if he said he is not concerned, I’d say some part of the puzzle is missing.
Assuming the .260 is the reading, I’d ask for a retest in a month. Or less. I’d guess the Dr may be suggesting that anyway. If there is one more, or two more rises past .26, it would probably call for follow up treatment, likely salvage Radiation. Let’s hope that’s not the case, but if it is, it’s another chance at cure.
Posted 11/4/2018 9:12 PM (GMT -5)
Not the best number. You need to talk to the doc and like repeat the test to confirm the number.

Something may have been left behind.

Hard to say right now, but sadly you might be in for a bit more treatment.

Andrew
Posted 11/4/2018 9:33 PM (GMT -5)
Rechecked...it reads 0.260.
Haven't talked to my urologist yet...just my GP.
Here is a repost of my post-surgery pathology report:

Gleason 8 (4+4) Gleason Grade Group 4
Estimated 10% of prostate involved with tumor
Negative for extraprosatic extension of tumor
All margins free of tumor
Pathologic Stage Classification: pT2 pN0 pMX
Lymph nodes: Seven of seven (7/7) lymph node negative for metastatic carcinoma.

Worried.....never out of the woods!!!!
Posted 11/4/2018 9:41 PM (GMT -5)
With the ultra-sensitive psa test, a good result after surgery would be something like <.008, which is considered "undetectable." Undetectable psa is what you want. A conversation with your urologist is in order. Now they need to figure out where the psa is coming from. Wishing you the best of luck! Keep asking questions here.
Posted 11/4/2018 10:04 PM (GMT -5)
I understand, and thank you.
I thought I was out of the woods with the great post-surgery pathology report. Guess I'm back in the trees.
WHEW...I hate this!!!! Nurse wondered the other day why my BP was a little high...YOU THINK????
<Dennie>
Posted 11/4/2018 11:35 PM (GMT -5)
Yikes! Dennie, I can see why you might be concerned. If after you confer with your urologist and hear what he thinks is going on and where the best path is to get you out of the woods, you will probably need to be visiting with a radiologist that specializes in prostate cancer patients. I know you do not want to travel, however this could have real impact on your life expectancy. I would encourage you to get a second opinion from M.D. Anderson here in Houston. Dr. Deborah Kuban was my RO. I could not have had better outcome!!
Posted 11/4/2018 11:44 PM (GMT -5)
I know you don't want to deal with more, but SRT is likely in your future - possibly ADT.

It's not what you want, and it sucks.

But it is what you have to deal with.

Andrew
Posted 11/5/2018 5:47 AM (GMT -5)
Dennie, yeah, that sucks. Let us know what the Uro says, and I'm guessing he will (a) want another PSA promptly, and (b) he will give you a referral to a RO.

Where did you say you're located?
Posted 11/5/2018 9:39 AM (GMT -5)
I am located just NW of San Antonio.
Have an appointment with my urologist today (called and they had a cancellation).
To say the very least...I'm going out of my mind today!!! Chest is pounding....Don't know where to turn.
Posted 11/5/2018 9:59 AM (GMT -5)
I image that the emotions are running high in you right now. Get to the doc and then deal with what you have.

It is scary and the thought that you may need more treatment isn't what you wanted and there has to be a bit of fear there. That would be natural at this point.

but try to take a couple of deep breaths and work through what you need to do. Then take some time to deal with your feelings and hurt at having to keep going down this path.
Andrew
Posted 11/5/2018 10:06 AM (GMT -5)
Thank you Andrew...thank you to all.
I feel like I'm back where I was 4 months ago...only worse.
Had a great post-surgery pathology report and thought the sky was blue...and clear.
Now there appears to be dark clouds on the horizon!
I have to admit: I'm scared!!!
Posted 11/5/2018 10:39 AM (GMT -5)
On the good side, you still have curative treatments available.

try to change to partly cloudy with a chance of rain.

Andrew
Posted 11/5/2018 11:12 AM (GMT -5)

Dennie M. said...
Nurse wondered the other day why my BP was a little high...YOU THINK????
<Dennie>

Dennie,
Best of luck with your uro appointment today. Let us know how it goes. I agree with others that it's time for you to consult with an RO.

As for BP -- when I checked in for my first Firmagon shot - a double dose in the abdomen, I thought I was cool and steady. But my BP registered something like 150/80 rather than my usual 120/60 or so. Just prooves you can fake cool, but the BP cuff will give you away. And FWIW - the shots turned out to be nearly painless, not at all as bad as I was expecting, even though pretty sore the next couple of days.
Jim
Posted 11/5/2018 9:47 PM (GMT -5)
Well I went and saw my Urologist today and feeling a bit better.
He said that it's still a bit early to get super upset over this PSA reading and wants to wait for 3-more months to retest. Said that there is still a lot of time to go with radiation and/or other options it it goes up then. He told me that it's not real unusual for a PSA to stay at 0.2??? for a while or even for the rest of my life, as long as it doesn't start to creep upwards.
I trust him....I have to. Don't feel as bad as i did last night or this AM. Still concerned but will give it another 90 days to see what it does. No reason to get in a BIG rush. At least IMHO.
Thank you everybody for your support....and advice. I hate this crap.
Dennie
Posted 11/5/2018 10:28 PM (GMT -5)
It is your life-you'll decide what is best. But I'd get a second opinion. Either from a MO or a RO. Even a different surgeon. And I'd test my PSA in a month. I thought my 1st post op test was good but my surgeon said "you don't have a prostate, it should be zero". He sent me to a RO. Your insurance probably covers a second opinion. Cleveland Clinic does them by phone. Perhaps MD Anderson does too. And I hate this crap too.
Posted 11/6/2018 5:03 AM (GMT -5)
Dennie, my Uro said no worries until it gets to .2, then do scans. 2 RO’s had a different opinion. I think RO’s and uro’s Think differently.

But as GoBucks said it’s your decision. What’s important is that you are comfortable with it.

One thing...I would urge you to not wait 3 months. Insist on a retest in a month. If it stays where it is, you’ll have reason to relax. If it goes up, it gives you a head start on the next move,
Posted 11/6/2018 6:52 AM (GMT -5)
Dennie,

I'd also suggest you get another PSA within a month, and get a second opinion. While it's not uncommon to have a post surgical PSA at 0.1 or above 6 weeks after surgery, by 3 months you should be non-detectable. This is definitely cause for concern, and a consult with MD Anderson sounds like a good idea to me.

It's not the end of the world...but it is certainly cause for concern. With your high-risk diagnosis, it's entirely possible there is a hot lymph node or something else in there that they didn't see.
Posted 11/6/2018 7:10 AM (GMT -5)
Dennie, I agree with the last few posts. With your diagnosis I think another PSA check in a month is in order. I would also make an appointment with an RO for another opinion. You don't want to let this get away from you.

Jim
Posted 11/6/2018 11:41 AM (GMT -5)
Dennie...I hate to write this since you said you're feeling better after talking to your uro, but I also agree with the guys here that are recommending that you see an RO sooner, rather than later. Over the years I've read a ton of posts about lingering PSA and when to pull the trigger on radiation and it almost always comes down to doing it sooner if there's evidence that something might have been left behind. I think most would agree that your PSA score three months after surgery would qualify for that. And even if you meet with an RO now, I'm sure there's another PSA test prior to any treatment so you still have the opportunity to monitor your PSA.

But here's the good part...if you need it SRT has a good chance of delivering the PCa knock-out blow. Most of the guys here that have SRT seem to cruise through it pretty well--there's no reason that you can't as well. And if the PSA does drop while you're meeting with an RO then that's the best case scenario. Good luck to you!
Posted 11/6/2018 1:09 PM (GMT -5)
Dennie,
I agree with the guys who basically said get on top of this sooner rather than later.
Ask for a retest in one month. Not 3 months. If you have to pay the $80 out of your own pocket do it! I'm sure you've read enough by now to know 0.26 post surgery is not a good number. You want to be <0.03. In fact there are plenty of studies (search for discussions on this topic) that indicate a post surgery psa above 0.03 is the most significant factor in determining the need for follow up treatment. You are well above that.
I'm not your uro but I can't understand why he is making you wait an additional 3 months for a diagnostic PSA. The earlier you get follow-on treatment the more effective.
If your state is like NY you must have a doc order the diagnostic PSA. As your GP if you have to - but DO IT!
Don't wait for your Uro.

I will sound like a cynic now so feel free to stop reading...
Of course your Uro/Surgeon is not concerned with that value! It's not HIS PSA! I'm willing to bet if he had that number post surgery, he would be getting a follow up test in a week - and scheduling a rush appointment with an RO !
Anyone want to bet against me? I didn't think so.

Good Luck
Jeff
Posted 11/6/2018 9:48 PM (GMT -5)
After reading comments here (thank you), I've decided to contact MD Anderson (UT) here in San Antonio and get an appointment for a 2nd opinion.
Also, I agree about getting another PSA test (probably will be done by the 2d opinion, but in any case...going to get one within the next month.
Thank you again and will keep you updated on my progress.
I like my urologist...but...as you said, it's not HIS cancer.
<Dennie>
Posted 11/7/2018 6:12 AM (GMT -5)
Good call! Now get busy and do it! Don't let more time pass!

(Whew! I can sleep now.) smile
Jeff
Posted 11/7/2018 9:49 AM (GMT -5)
What Jeff said - great plan - get it done!
Posted 11/7/2018 10:08 AM (GMT -5)
Dennie,
If you look at the number of posts generated by the guys who are sending advice your way, you can see they have been around here for quite some time. With that in mind, they pretty much know what they are talking about. Remember, it’s only advice, but it’s darn good advice. Experience is a great teacher. Great choice in getting the second opinion done. Look for the best RO you can find. Octorobo supplied a name at MD Anderson, Dr. Kuban. He seems happy with her but it will come down to your comfort level with your doctor. The doctors experience along with your comfort level are whats important.
Keep everyone here in the loop. Good luck
Posted 11/7/2018 11:06 AM (GMT -5)
Good on you. Pretty soon you will start a new thread: "I'm Frick'n Relieved"
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