Overwhelming fear after undetectable to slightly detectable psa

Posted by Ksusan @kscharmer, Jan 16 10:15am

My husband had a prostatectomy in June 2022. Gleason 3+4 (less than 5% 4) organ confined disease. His pre-op PSA was 7.
Last week he had a USPSA result of .14, first detactable PSA postsurgery.
I watched my dad die from prostate cancer in 2009. This USPSA result has triggered overwhelming fear that my husband will die and memories of all that my dad had to go through.
I need reassurance that he won’t die.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I'm sorry. I know what it's like to see that low number start to creep up.

But from what I've been reading, even if it's the worst-case scenario we still have several years or even a few decades of playing "whack-a-mole" with reasonable quality of life.

Good luck.

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KSusan,

Agree with bluegill.

I was researching information regarding the Decipher test, regarding my prostate cancer diagnosis, and found this 4 minute video, by Dr. Judd W. Moul, MD (who has performed almost 2000 RP's) and how the Decipher test can be useful in determining "next steps" in situations of a post RP "smoldering PSA". I think you and your husband will find this video comforting and helpful, as you talk with your doctor(s) about options.


All the best!

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Received hormone treatment with casodex. Sixty days later diagnosed with heart failure. Stopped casodex.
Received a crt-d implant two weeks ago. Dr. Wants to start hormone therapy with casodex for two weeks, than
Elligard. Had a psa of 21 when starting casodex. After two months psa was 6.5. Now it’s 25. I will be 83 in two
Months. No other health issues. My second pet scan shows cancer spread mildly to t-2, t-4, t-12, sternum, and
Two ribs. I’m scared to start elligard, as I read about lots of very uncomfortable times from stories on the forums. What would happen if I stayed with casodex 50 mg per day. This did drop my psa in a60 day period.
Any ideas will be appreciated.

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Just checking. Was that 0.14 or .014? The second would be a much more common result on an ultrasensitive PSA, especially if all prior reading were undetectable. (I find it hard to keep the zeros straight sometimes.) My understanding is that undetectable PSA means less than .020 (they say .01 or less is undetectable) or less than .008 (they say .006 or less is undetectable) depending on which assay (test protocol) is being used. For my urologist, rising PSA passing 0.100 would mean time to pursue further treatment.
But not time to panic :-). While we can all panic, there are some on this forum who have been living with PC far beyond this point in the journey, like @kujhawk1978 .
And sorry about your father. Losing close family members is usually a very deep loss. My hope and wish for you is that you have many years left with your husband, and statistically that is by far the likeliest thing to happen regarding this stage of his PC, including a 0.14 result on the uPSA.
Still, my family really doesn't like it when I mention the possibility I will die. I'm not sure how avoiding that topic helps with the two possibilities--every day, week, and year either I die or I don't. I actually hope to die before my kids, maybe at the same time as my wife? It doesn't matter, in general I don't get to choose, although I suppose I could make a poor decision that might lead to death.
With regard to the PC, the two of you are looking at it and dealing with it day by day as best you can with support from others, including the medical team.

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I had my RALP in Aug 22. I know I dread each PSA test. As referenced in the video in Handera reply hopefully this is benign tissue. There is a Jan 23 video from PCF org that discussed rising PSA and the slight regrowth of the Prostate as a cause of slightly elevated PSA numbers. I'm sure your husband's Urologist will want to run PSA blood tests monthly now. If it keeps rising he will probably suggest a PSMA test that will most likely show no signs of cancer. PSA is a wonderful simple test that warns us of cancer before it has a chance to turn lethal. They will then perform salvage radiation to the prostate bed and pelvic area. May prescribe ADT also for a specific length of time. Back in the 90's they did radiation to the bed and pelvic area as a standard course of practice along with the removal of the prostate. Since then they've learned radiation is not necessary in a good number of cases so they stopped prescribing it as a Standard course of practice. My friend had the salvage radiation a year after his surgery and his PSA is undetectable now. I know the last thing you or your husband wants is for the PCa to rear it's ugly head again but the odds are clearly in your favor.

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I certainly empathize with your husband’s diagnosis and your concerns. I had a similar diagnosis in 2001. My cancer has recurred three times since then and I have undergone multiple rounds of hormone therapies and radiation with only mild side effects except for erectile dysfunction and incontinence. Some folks consider these consequences major. For me they are the price paid for being alive and having a relatively normal, happy life at 78 years old. Your husband’s experience will be different. All cancers are unique to the individual and treatments today are more effective and less debilitating. In your case, you have many reasons to be hopeful. Do your best to be positive, maintain a healthy lifestyle, and live in the moment, neither regretting the past nor worrying about the future. When worries do come, as they will, look for what you might learn from them, let them stay with you a while without getting caught up in them and then take deep breaths and let them go. Let gratitude be your constant companion. I wish you well. You have many fellow travelers.

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Here's my clinical history...

Many things etched into my memory, the call from my urologist saying the TRUS biopsy was positive for PCa, then his comment after our first consult scheduling the surgery, "Kevin, that's a pretty aggressive cancer...," my surgeon going over the pathology report saying that combined with his observations during surgery, I should have no further problems while I'm thinking, hmm, MSCKCC nomogram says I have a 30% chance of BCR and that Mx means you don't know if I have distant metastases, that same surgeon turning to me at 15 months and saying, Kevin, this doesn't eyour PCa is back...," my radiologist turning to me 90 days after finishing SRT, saying, "Kevin, that didn't work, what do you want to do next!?

Sme things to keep in perspective.

Yes, roughly 27k men die each year of PCa (when someone clumsily tells me, oh. you'll die with it of something else, I count to ten, then respond, how do you know!?)

Thanx to medical researchers, the revolution in PCa treatments since roughly 2010-2014 are gradually having an affect on managing this as a chronic disease, albeit the treatments are not without their side affects.

Take a deep breath and then consider lowering your horizon. By that I mean instead of thinking 10-15 or so years, whatever the life expectancy if you take out the PCa, think of three to five, will this treatment work for the next three to five years, if so, great, new treatments are in the pipeline as I type and if, when it comes back, you can throw something else at it I believe we are on the cusp of individualized treatment vice population, historical standard of care based on genomics.

So, like I did in 2014 when my urologist called me, you and your husband have "earned" the right to a pity party. Then, get up off the floor and fight.

If you have not already, a starting point would be to read the NCCN guidelines. The Prostate Cancer has a pretty good patient guide. Perhaps start your literature search by visiting (and bookmarking) the NCCN Centers, you will find other reliable sites, the PCF is one, American Urological Association...

Your husband's PCa is not your father's. Find an old time radiology tech and ask about how they delivered radiation in the 90s, lead plates, moved each time, now it's 3D mapping software, imaging in real time to adjust delivery based on breathing, movement..

Kevin

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He should be fine once.2 give a PSMA pet scan and probably do salvage radiation treatment

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@aircam

Received hormone treatment with casodex. Sixty days later diagnosed with heart failure. Stopped casodex.
Received a crt-d implant two weeks ago. Dr. Wants to start hormone therapy with casodex for two weeks, than
Elligard. Had a psa of 21 when starting casodex. After two months psa was 6.5. Now it’s 25. I will be 83 in two
Months. No other health issues. My second pet scan shows cancer spread mildly to t-2, t-4, t-12, sternum, and
Two ribs. I’m scared to start elligard, as I read about lots of very uncomfortable times from stories on the forums. What would happen if I stayed with casodex 50 mg per day. This did drop my psa in a60 day period.
Any ideas will be appreciated.

Jump to this post

Took Eligard for 42 months. Great response to it. I am back on the drug again due to lymph node metastasis. I only have/had two constant side-effects: hot flashes and fatigue. I may have to take it for an even longer period of time now. It helps that I take a shot every 6 months. Best to you.

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