Reason to be concerned?: Okay, I... - Advanced Prostate...

Advanced Prostate Cancer

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Reason to be concerned?

Oct18 profile image
16 Replies

Okay, I realize we all on this website have reason to be concerned but....... I was diagnosed October 2018 scans showed a spot on my pelvis, 8th rib, 2nd rib and spine. PSA 43 and 12 of 12 biopsies positive Gleason 8 and 9. I was 46 (now 48) and have been on lupron, zytiga then switched to Xtanti due to elevated liver enzymes and radiation to my prostate and the 4 spots I mentioned was completed last July. I’ve exercised regularly, eaten very healthy (vegan, my choice, not Dr.’s), prayed, basically done all I can to be positive and healthy. Last September my PSA hit the undetectable mark and remained there until today’s reading of .02 at Duke. The NP said it is still a great reading and was okay with me coming back in 3 months but I opted for a 6 week checkup to check my PSA again. I know it’s always possible that it is starting to rise but she said there is a margin for error and it could “waver” along that less than .01 and just above, which is where it was today. I’ve had about 15 months of “good” dr visits knowing at some point that steak may/will end. I’m I overreacting to today’s PSA reading?

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Oct18 profile image
Oct18
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16 Replies
Shooter1 profile image
Shooter1

Yes. My PSA Last test was 0.1. Before that 0.00/ 0.08 /0.13/ 0.12/ etc. A small bounce is what I have gotten used to. All my 6 bone mets are undetectable on scans and lymph nodes have disappeared. Still showing PSA and have Pc hiding somewhere . Joined the wait and see club, better than the waiting to die club..

Oct18 profile image
Oct18 in reply toShooter1

Thank you Shooter1! I guess asked 2 questions that would have different answers. You mean “yes”I’m overreacting based on your reply?. They did imply if my next result goes to the range of .1 or higher we will need to try something new. But for now I’ll take my .02 and be thankful

Tall_Allen profile image
Tall_Allen

That is a great PSA response! You probably won't take another diagnostic or treatment step until your PSA reaches around 2.0, so more frequent checks will only cause needless anxiety. I think the 3-months to the next PSA advice they gave you was good advice. Also, the ultrasensitive PSA test (lowest reading 0.01) at this point serves no function other than driving you crazy - maybe ask them to switch it to a conventional PSA test (lowest reading 0.1) next time.

Oct18 profile image
Oct18

Thank you Nal! Great advice and I usually have the test at the same time but not fasting, around 12:00-1:00 pm, breakfast but no lunch yet so my stomach is realativly empty. I should know but BCR? Is that castrate resistant?

Oct18 profile image
Oct18

Thank you TA! I have been fortunate to not have much anxiety for the last almost a year and a half. Today was just a little setback mentally to not hear what I wanted to hear “UNDETECTABLE “, though I know undetectable does not mean cancer free. Several on this site have often different opinions, but I certainly appreciate and value all of them. Thank you for taking the time to answer me. And I wish everyone the best on their journey as well!

treedown profile image
treedown in reply toOct18

As I understand it, as I am in a similar treatment schedule as you <.1 is considered "undetectable" unless you had your prostate surgically removed. I may be wrong but this is how I have had it explained to me. Additionally what TA said above is identical to what my Dr told me and I have read a few times in outside article/papers. I have chosen to stick with the non-ultrasensitive PSA test for that reason. At least during my first round of treatment and until I become CR.

Oct18 profile image
Oct18 in reply totreedown

That makes sense. Duke can measure PSA to less than .01, which is where I usually have my PSA checked. Last year to save me the trouble of traveling while checking my liver enzymes, I had blood work done locally (I live a little over an hour from Durham) and PSA was also checked but it could only measure to less than .05 so according to my local Dr.s, I would still be considered undetectable.

Oct18 profile image
Oct18

Got it, and thank you for the prayers!! Prayers for you too!

Magnus1964 profile image
Magnus1964

Small changes in PSA such as yours could be attributed to irritation or inflammation in the prostate bed. I would not worry till you get 3 significant rises in a row. till then, enjoy the low score.

Oct18 profile image
Oct18 in reply toMagnus1964

That seems to be the consensus, Thank you!!

dougnola profile image
dougnola

My doc is Sartor in NOLA. Mine was aggressive 498 and now ND since August 2018. In my case, they are doing basic labs every two months. What they’ve indicated to me every two months is generally ok even if psa starts to rise slowly as they will want to measure the rate of change (rate is just as important if not more so than the value, particularly when low). If it starts to change rapidly they may go to every month.

I’m in the camp of having slightly more peace of mind with more regular check ins than waiting for a long period and wondering in between. But that’s me. Good luck! ✌️ Doug

mcp1941 profile image
mcp1941

you still have your prostate gland so that may be putting out some PSA. I had EBRT and Bracy 24 years ago and was good for fifteen years. My PSA chart showed a little wavy line going across the bottom the chart sometimes with undetectable readings and other times with a low PSA reading. then in the 15th year I had 4 consecutive rises in PSA and went to an MO for treatment. The last 9 years I have been fighting BCR. No mets yet.

jfoesq profile image
jfoesq

I have been treated at MSKCC in NYC for 8 years. They choose not to measure below .05. I assume for the reasons TallAllen mentioned. Why drive yourself crazy about minute changes when treatment likely will not change until one reaches or approaches 2.0

j-o-h-n profile image
j-o-h-n

I think you need to see a prOCTogist.... he maybe able to place his finger on your angst....

RELAX!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/06/2020 6:38 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

There you go. Giving bad advice again. Last time a prOCTogist told me to relax, he shoved an electric stapler up my angst and pulled the trigger 12 times. You know what the smell of bloody urine in the morning smells like? It smells like bloody urine.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

As usual I only give badass advice..... I guess you're no longer on speaking terms with your prOCTologist... Bloody urine and napalm in the morning - a smell to die for..........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/07/2020 12:43 PM DST

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