PSA anxiety
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Freaking out because I had 6 consecutive PSA results < 0.05 readings after restarting degarelix in July, 2024. Yesterday my result was 0.05 - no minus sign. I was not ready for anything other than < 0.05 but my buddy the less than sign didn’t show up.
So after spending yesterday in the fetal position I’m feeling a little more rational and seeking opinions from people who have been there.
Had my last degarelix injection yesterday. I had a prostatectomy in Dec 2024 despite suspicion of LNI so removing my prostate is no guarantee that cancer is gone. Had negative margins and no LNI involvement though the surgeon checked only 3 LNs. Our suspicion comes from 2 LNs that lit up > 7 SUV on a PSMA PET several months prior to the surgery
Anyway - the purpose of my post is to hear your thoughts on this PSA result I got yesterday. It’s not a typo. There was no less than sign before the 0.05.
When my oncologist called me, I was already at home under the covers in the air conditioning, wallowing and ruminating.
I’d like to hear from anybody with positive or negative views on this reading. My oncologist is very clinical and empathy free which comes in handy.
Heof course said readings jump around and I was the one to point out to him that we had this situation back in November where a < 0.05 turned into a 0.05 and it ended up being nothing to worry about.
I was high as a kite, thinking I’m getting off these damn hormones and dreaming of losing my man boobs and dropping 2 inches on my pants.
I’m feeling better than I did yesterday, but my mental state is not great.
Please tell me what you think about this? Is it much about ado about nothing? Is it a clear sign that my PSA is about to increase maybe something in between?
PSA
08/26/24 0.10
09/23/24 0.07
10/21/24 < 0.05
11/25/24 0.05
01/17/25 < 0.05
02/17/25 < 0.05
03/17/25 < 0.05
04/21/25 < 0.05
05/19/25 < 0.05
06/23/25 0.05
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Jeffmarc can answer your questions. I m only a novice and I think your over reacting. That reading can t even be seen on a PSMA PET scan. Next months reading will be if more value- relax at least for 30 days.
Tell you what. I'll trade you my anxiety for yours.
PSA
3/12/25 - 24.77
4/21/25 - 30.00
< 0.05 could be 0.049. I sure wouldn't worry about it. Especially if my Dr wasn't concerned.
PSA anxiety is real. I have my first post RARP PSA in August. I have significant anxiety of what's going to happen if the numbers warrant further treatment/testing. If they are high then I go for ADT and Radiation and Chemo. I don't know how I'm going to react to my scores. My gut hunch tells me they got all the cancer when they removed my prostate. My path report came back great and my PMSA indicated no spread. I try not to think about it, but of course my brain keeps going back to it. Are you doing anything to help with your Anxiety? Like Counseling or Anti Anxiety meds? I try to distract myself with various hobbies etc. Have you tried any of that? If I could give you a hug I would.
Thank you
Greet advice on the 30 days. In fact, I’m not going back until August 4 so maybe I’ll really let my hair down.😁
Thank you for replying. I’ve been there despite having a father who had prostate cancer. I didn’t get my PSA checked until age 61 like an idiot. I put up a 28. The first hospital. I contacted pushed me out many weeks, which seemed odd to me so my next PSA was 42. Good luck to you. My oncologist is optimistic and I’m not a mild case.
You have had this exact same thing happened before. Did you panic so much when that happened? You’ve been in this forum since 2023. I would think you’d have posted about it the last time this happened, but you didn’t.
It could be your result had actually been .04 in the past with a wide (.01) swing to .05!!! Your number is so low you really need to let it go in your mind. It is not a big deal to have it go up such a small amount, Especially considering the fact that it bounces around for so many people.
It has to hit .2 before salvage radiation is considered. You have a small bounce. Try to lower your level of anxiety for a few months. I have been in this PC quandary for 15 years. After over 8 years of monthly tests I no longer wait in anticipation of my monthly results. It has been < .1 for 19 months but could go up at any time? I don’t get the ultrasensitive test. I could be less than .05 but I don’t need to get concerned about those really small numbers if my PSA gets above .1 it is time to consider what to do next, if it keeps rising. I also attend weekly advanced prostate cancer meetings with Ancan.org where people come in frequently to discuss how their PSA has gone from (for example) .06 to .07 And they are panicked about the rise. The people running the forum find it almost humerus for somebody to worry about the small changes when other people actually have significant rises above 1 that are problematic.
I’m not doing anything for my anxiety except limiting and almost eliminating alcohol and exercising as much as I can. I was on a real Jahad with exercise taking the train into Manhattan just to swim at a great swimming pool round-trip from Grand Central is 7 miles so I was racking up walking and swimming miles
Then I got a retinal detachment which is absolute hell on earth for about 2 to 3 weeks, but then gets better.
I had a horrendous experience with counseling. I’m being treated at a World famous hospital for cancer. One time when I was getting prepped for a prostate biopsy. I mentioned to the nurse how difficult life has been in addition to the cancer that was the wrong thing to say Because they called security and had me take it out of there because they thought it was a suicide risk I’m open to counseling, but I feel a needle in a haystack to find someone there’s no chance in hell that some 35-year-old woman from the upper west side Can help me
As soon as the NYC temperature gets below 100° and I reach eight weeks on my retinal detachment. I’m gonna be swimming again. That will fix everything.
Oddly enough, I ran into a guy in my oncologist waiting room yesterday who is way worse off that I am. In fact, he looks like the cartoon is Scott Adams in so far as both of them are visibly gaunt from having prostate cancer in a late stage, anyway, my therapy is talking to men Who are in our situation the answers I’ve already seen here even though I put my post up a short time ago are worth immeasurably more than the words of some psychologist in Manhattan.
Thanks again and keep up the fight. Thank God for sites like this.
I dictated this so there may be some crazy words. I’ll proof it later.
Thank you for this great response and for mentioning the meetings you attend. Elsewhere on this forum and generally in life I’ve been asked many times if I’ve had counseling I have and I can’t stand it. I’d like it a lot if I could find a man who has been through what we’re going through and happens to be a counselor. Also, I’m really running into severe ghosting by Friends because I have other issues besides my cancer so anyway, I find groups of men who have prostate cancer to be the best place to talk
yesterday I met a guy my onco‘s office who was in really bad shape, but he had a great attitude. As for the first time this happened in November 2024 I was not panicked and I don’t remember why but six weeks ago I had a retinal detachment which has thrown me into a mental spiral. It’s a harrowing injury. I’m coming out of it now and feeling better but Still, it threw me into a very dark place - pun definitely intended.
You should come to the Ancan.org speaking freely meeting. It’s for people to come and discuss other issues besides the actual treatment of their cancer. Usually at least 15 guys show up and we discuss all different types of things. People come in and talk about what really worries them, What kind of issues come up because they have cancer, and sometimes that’s not even involved.
If you go to the Ancan.org Website you Can sign up for the meeting and they’ll send you An email with news, If you sign up for the advanced prostate cancer meetings, you get a weekly newsletter that is really useful. This week it had a lot of information about articles discussing what happens if your PSA starts rising early in treatment, there was another article about actinium vs Pluvicto which went into great detail about how each worked on the body.
The next speaking freely meeting is held on July 3 at 5 PM Pacific time. It will be on again, two weeks later.. The next Advance prostate cancer meeting is tonight at 3 PM Pacific time.
As of your latest reading, you don’t yet have enough information to be freaking out, going fetal, or wallowing.
What the “< “ (mathematical “less than” symbol) means is that that’s the lowest PSA that their test equipment can measure. So, < 0.05 might simply be 0.04 (or 0.03 or 0.02 or 0.01) - there’s simply no way to know. It might even be within the margin of error for that lab’s test equipment.
> are all of those PSA results using the same lab?
What you do know is that your PSA is still very low. Keep tracking your PSA every month to see if it stabilizes.
We all know that the technical definition of biochemical recurrence (BCR) following prostatectomy is a PSA of 0.2 ng/mL. However, we also know that BCR can occur well before PSA reaches 0.20.
> you indicated that you just had a degarelix injection. What is your testosterone level? That helps determine what’s going on.
> with PSMA activity on your lymph nodes, were radiation treatments planned? Was there PSMA activity anywhere else in your body?
The difference between < 0.05 and 0.05 is unknown.
Again, if it were me, I’d keep tracking my PSA once a month.