PSA creeping up: Hi guys, I had... - Advanced Prostate...

Advanced Prostate Cancer

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PSA creeping up

John347 profile image
21 Replies

Hi guys,

I had radiation therapy in 2023, and had 18 months of adt. Last lucrin injection (3 month dose) was in August '24.

My last few PSA readings are as follows:

0.02 ug/l (28/5/24)

0.04 ug/l (29/8/24)

0.09 ug/l (21/11/24)

0.22 ug/l (12/2/25)

Testosterone reading < 0.35 nmol/L

(12/2/25)

My PSA seems to be doubling every 2 to 3 months. Anyone with similar experience? What does the rising PSA mean? Does it indicate a recurrence of the cancer?

I will meet with my oncologist, on Wednesday. I like to hear what you guys suggest I should do next in my treatment journey.

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John347
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21 Replies
VictoryPC profile image
VictoryPC

Don't worry too much about those little numbers I say.

Justfor_ profile image
Justfor_

Similar case :

healthunlocked.com/advanced...

Though less defined, as there are no Testosterone pair readings to correlate with.

John347 profile image
John347 in reply toJustfor_

Thank you Justfor, I'm aware of the thread and will reread it.

PSAed profile image
PSAed

Hi John347, from a search on this site doubling time is not calculated on PSA readings below 0.1 ! Also as you stated your last ADT 3 monthly injection finished August 2024....I would allow an additional 3 months after that to make it November '24 effectively. So really your PSA has not quite settled yet after treatment.

healthunlocked.com/advanced...

Please follow that link for more information, especially Tall Allen's reply. I hope that eases your mind a bit. Best of luck next Wednesday and let us know how you got on.

nextphase profile image
nextphase

Just wondering why did your oc take you off lupron if your numbers were still detectable?

John347 profile image
John347 in reply tonextphase

He took me off Lupron because I had already completed 18 months of adt. My last Lupron jab was in August '24, but my psa was already rising before that.

Hawk56 profile image
Hawk56

Well...

From my perspective and experience I would consider doing nothing at this point except continuing labs and consults and living my life.

You may want to consider discussing and developing rules for what constitutes actionable clinical data that may inform any decision to treat.

For my medical team and I one of those criteria is PSA rising to between .5-1.0. Why, we feel that constitutes a level where it is reasonable to do a PSMA PET scan and locate where the recurrence is.

That's what we did in 2023, it "showed" a single lymph node which we used SBRT to treat. Given my high risk, GS 8, GG4, PSADT and PSAV along with the "short" time to BCR after surgery we knew there was micro-metastatic PCa elsewhere so we added systemic therapy for 12 months.

It's been 10 months since I came off that treatment, T has returned, PSA has behaved and stayed well below our decision criteria to image.

The dilemma we all face is our decision to treat, when, too soon, too late, with what, for how long...

There is a wide range of people on this forum and their approach to treatment. Some treat at levels such as yours, not wanting to give it a chance to get out of control, others are comfortable with letting it increase to higher levels before treating.

I think you may want to consider at your consult with your medical team discussing what approach you and they are comfortable with and any risks if you decide to wait. If the latter, just enjoy your life. If the former, well, ok but you may be looking at systemic therapy only as you won't know where it is. You can guess and do SRT to the prostate bed, be aggressive and add WPLN.. my analogy to that is WWII dumb bombs versus today's smart ones.

So, long way to get your question, were it me, I would do nothing, wait, image and then decide. That would open up a viable option of MDT only.

Kevin

Clinical History
John347 profile image
John347 in reply toHawk56

Thank you Kevin for your advice. As you have suggested, I'll probably let it rise for a while before taking action. Thanks for sharing a graphical presentation of your cancer journey. That's informative and inspiring.

I've been planning to go on a trip with my wife next month and do not want any side effects from any new medication to spoil the trip. We've been doing quite a bit of travelling the past year. I intend to enjoy every minute of the rest of my life while I'm still relatively fit and healthy. 👍🙏😊

Hawk56 profile image
Hawk56 in reply toJohn347

Good choice, travel well!

Wife and I are going to Sedona in April and Lake Tahoe with our daughters in May.

Mgtd profile image
Mgtd in reply toHawk56

Hawk56 You will enjoy it. Are you a hiker? Take the canyon road to Flagstaff and visit the Grand Canyon. Depending on time there are other places to see.

I retired to the area some 25 years ago. Enjoy your trip!

NecessarilySo profile image
NecessarilySo

Following a prostatectomy, the most widely accepted definition of a recurrence is a confirmed PSA level of 0.2 ng/mL or higher. After radiation therapy, the most widely accepted definition is a PSA that rises from the lowest level (nadir) by 2.0 ng/mL or more. It’s important to try to always use the same lab for all of your PSA tests because PSA values can fluctuate somewhat from lab to lab.

After radiation therapy, doctors need to look for confirmation from multiple tests because PSA can “bounce” or jump up for a short period, and will later return to its low level. If only one test was performed, it’s possible that it could have occurred during a bounce phase, and that the results would therefore be misleading. PSA bounces typically occur between 12 months and 2 years following the end of initial therapy.

If your PSA is rising but doesn’t quite reach these definitions, your doctor might initiate further testing to assess the risk that cancer has come back. This is a gray area that requires a lot of input from your team, possibly inclu suggestion is to ding your urologist, radiation oncologist and medical oncologist to help you decide on the best course of treatment.

My suggestion would be to postpone resumption of ADT until you have higher PSA levels, more like the 2.0 or even higher. In my own case we waited until >4. Watch your PSA quarterly for about a year, and then resume, unless of course it is a "bounce" that returns to nadir..

John347 profile image
John347 in reply toNecessarilySo

Thank you NecessarilySo, as per your suggestions I will take a wait and see approach until it rises to 1.5 or so. I will also shorten the time interval between tests to 1.5 months.

Mgtd profile image
Mgtd in reply toJohn347

John I have found that shorter time between PSA tests just increases anxiety and does not add to the diagnosis accuracy.

One other thing as T rises so does PSA. That is normal. The bump mentioned above normally occurs much latter if at all. If my memory is correct only around 12 to 20 of people experience that bump.

Hi, it must be difficult to see such numbers going up. It must so overwhelming and concerning for you and your family. While, I have seen in my family as a caregiver that numbers do rise to 35, 150 etc. but it's not directly proportional to the quality of life. Mostly, these numbers fluctuate up and down week over week. It would be ideal to consult with the primary Healthcare professionals to learn about what medications are being administered and how the body is reacting to it. I would also suggest reviewing pros and cons of the Lutetium treatment which seems to be an alternative to other therapies.

I know you are concerned along with your family. I hold your hand in these times and wish you beautiful shared moments with your loved ones.

John347 profile image
John347 in reply toHealerWithPrayer

Thank you for your comforting words. I appreciate your prayers. 🙏😊

jedimister profile image
jedimister

your numbers are still low, but that last reading is a pretty big jump. My oncologist has said in the past he doesn’t want to see them double from one visit to the next. But he adopted a wait and see attitude until my numbers got to > 0.8 and now we’re talking about alternative treatments. For context my numbers never got lower than 0.15 and have been creeping up for the past year

I also had another PET scan recently due to this which showed something new but fairly minor. At some point he may recommend that.

So see what your doctor says. No need to panic but you might have a little resistance to your treatment.

Good luck!

John347 profile image
John347 in reply tojedimister

Thank you for your reply. I think my MO will probably take a wait and see approach for now. The question is what is the threshold where action needs to be taken?

CosmicJerry profile image
CosmicJerry

John: I had something similar..... my PSA numbers have doubled every month for the last 4 months. I had a PSA-PET scan done. Now onto to the next phase of my journey. Feel better and keeping going !

John347 profile image
John347 in reply toCosmicJerry

Thank you Jerry for sharing.

Helpmate77 profile image
Helpmate77

Sounds like my husband's situation in regard to the rising levels (though low). And he has been assigned to a Nurse Practitioner who has no real training in prostate cancer!

Of course, the doctor he had before is not a prostate specialist, either.

He has his next test this week. His tests are six months apart and he is on Lupron. He's been on Lupron about 2.5 years.

Glad to see that some tests will show where the cancer has metastasized. They couldn't find it before.

He will be changing his doc after we get the next test results.

RoseDoc profile image
RoseDoc in reply toHelpmate77

You need to get your husband in to see a prostate cancer specialist, not a NP. NP's have their place but that is not in treating prostate cancer. They don't know what they don't know.

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