PSA 5 years later: i had a prostectomy... - Advanced Prostate...

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PSA 5 years later

Bobby999 profile image
44 Replies

i had a prostectomy in 2017 at 61 years old. My diagnosis was pt3a and gleason7 My PSA for the first 4 years showed< sign for ultra sensitive test. Now starting 5 year my PSA is now detectable starting at .014 and now .022. Is this a concern.

update i just received my psa results six months later .016. Guess it is better news as it didn’t increase. Will do testing every 6 months.

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Bobby999 profile image
Bobby999
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44 Replies
Calhoun113 profile image
Calhoun113

.2 or sometimes .4 is considered having a BCR (Bio Chemical Recurrance). I would just have your urologist keep an eye on it. It might level off. They would record doubling time as well as value, to determine if any action is needed. Good luck. Some advise that diet and exercise can help delay PSA rise. Plenty written about that.

Bobby999 profile image
Bobby999 in reply to Calhoun113

thank you. I started an exercise routine

Tall_Allen profile image
Tall_Allen

Not a concern. It's still very low.

podsart profile image
podsart in reply to Tall_Allen

I understand your logic but doesnt this PSA shift mean perhaps Quiescence and/or Senescent cells have become active for some reason, i.e., inflammation increase? If so, something caused this change. Wouldnt this warrant an attempt to correct the underlying cause? Perhaps doing a sensitive C-Reactive Protein test, as a diagnostic indicator.

Tall_Allen profile image
Tall_Allen in reply to podsart

No. Read the section "No/Delayed SRT" -

prostatecancer.news/2021/10...

podsart profile image
podsart in reply to Tall_Allen

thanks

gsun profile image
gsun in reply to Tall_Allen

Mine went for <.008 to .023. My MO said the same thing. Don't worry about it at this time.

Justfor_ profile image
Justfor_

Shorten your tests period and when you have 3-4 additional samples, all trending up, you will be able to calculate a reasonably accurate PSADT. This will tell you where you are going. Now, with only two samples, it's a coin toss.

tango65 profile image
tango65

The only concern is to watch the PSA and if there is a clear trend indicating the PSA is going up, discuss with a RO to have radiation to the prostate fossa plus whole pelvis radiation and ADT.

A Recent study by Dr D'amico from the Dana Farber cancer center in Boston suggest that best results of radiation in BCR after prostatectomy are obtain when the salvage radiation if the done with a PSA below 0.25. Something to discuss with the RO if it is needed.

KSK54 profile image
KSK54

I am also pt3a. Had prostactomy 13 years back. I second strongly what tango has said above. This is best course of action. Also add to have monthly PSA tests.

KSK54 profile image
KSK54

yes heart healthy diet and exercise a must.

That’s the reason my MO won’t do ultra sensitive PSAs. Anxiety.

Bigdo58 profile image
Bigdo58

I had exactly the same stats at 5 yrs out.

Oncologist recommended old fashioned EBRT 70 gy to lower abdo + lymph nodes, plus ADT for 6 mnths. I possibly would go longer on the ADT now, maybe 18 mnths. I went for it. Fell again to undetectable for another 3 yrs.

I am BRCA 2 positive though, so go safety first every chance.

I am still here heading for another 6 years. Had SBRT to one met recently and Zoladex another 6 months. Undetectable again, including visible peritoneal mets on last PSMA PET scan July 2022. The mets are no longer visible on PSMA PET just done.

hopeful1956 profile image
hopeful1956 in reply to Bigdo58

You are doing great! My husband has BRCA2 as well and is almost 2 years in. He's in the Amplitude study taking 1000mg Zytiga, 5mg Prednisone and 200mg either placebo or Niraparib plus Zoladex shot every 3 months. So far doing well other than hot flashes now and then and bloodwork is low on some things.

Bigdo58 profile image
Bigdo58 in reply to hopeful1956

Thanks hopeful '56! Yes, enjoying life still basically as normal. Still working, etc! I am going back on Zoladex shortly, after a 3 mnth holiday to settle down arthritis/joint & muscle pain flare I was getting. Going on that another 9 mnths though next month, with 3 mnths of Zytiga & Prednisone added to wrap up if I can take it. Will stop that for probs 6 mnths then after that, for testosterone emission to pretty fully come back, and PET PSMA image up again to be successful. Onco & I will start the SBRT with Zoladex process back over as needed. Hopefully all the while avoiding castrate resistance, as the Zoladex appears key to my survival, given it shuts down both estrogen and testosterone. The estrogen shut down appears important as well for me given peritoneal prostate cancer mets grow in ovarian dna on the smooth thin film/slippery stuff on my (& everyones) internals. Onco (a Professor/prostate specialist) believes as do I, that likely source of peritoneal mets was the Da Vinci prostatectomy, tools shedding cancer cells as dragged back through the small cut holes. I had zero margins and no lymph node involvement.

Bigdo58 profile image
Bigdo58 in reply to hopeful1956

I'll add here, that Olaparib certainly is and I think Rucaparib is available as well in Australia if you are BRCA 2 positive. Olaparib only on trials for men until recently, although already approved for breast cancer in women for quite some period. Subsidised (basically paid for) by the Government on national Medicare if castrate resistant only I believe, so it is pencilled in, in my future. Not sure Rucaparib is Government covered/paid for in Oz at all for prostate patients. Is your husband's Nicaparib new? Good if he is getting that early up into metastatic travel, given our BRCA 2 issue.

hopeful1956 profile image
hopeful1956 in reply to Bigdo58

We are in Canada. It's a double blind study, so not 100% sure what arm he is on. Nurse thinks he might be taking the Niraparib (Zejula) because of blood results.

On March 27th, 2017, the US Food & Drug Administration (FDA) approved ZEJULA (niraparib) for the maintenance treatment of adult patients with recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in a complete or partial response to platinum-based chemotherapy.

Bigdo58 profile image
Bigdo58 in reply to hopeful1956

Thanks for this. I note you need 'primary' peritoneal cancer to qualify for Zejula in Canada. I likely just have secondaries, soo mmm.

RJAMSG profile image
RJAMSG

Hello, just curious how long in between the .014 and .022 tests? Like others have said, it is very low but if it has returned/never completely left it is likely still around in the old prostate bed area, obviously if it never was eradicated the fact that it took so long to start going up again seems to indicate slower growing disease. If you get another test and it’s going up, hammer it with the radiation to bed/fossa and lymph area, may/may not need hormones (debatable) check literature and with knowledgeable RO. May need a decipher test too if you can get them to do it on your old tissue after RP. Please post your Pathology stats for the Otha if you get a chance too. Thanks Rob

Bobby999 profile image
Bobby999 in reply to RJAMSG

hi test results were one year apart. Lymph nodes were all negatives. Just took another test. Waiting for results.

RJAMSG profile image
RJAMSG

Well that’s good too, did not double in a year. Did you get a Decipher test? Positive margins/EPE? My RO told me to hit it earlier if it returned, maybe less chance of more spread?

Bobby, take a breath. Your PSA is undetectable. Any reading less than 0.1 is considered undetectable. I have had over 130 PSA tests since primary treatment from April 2003 to August 2003 and metastatic disease since May 2004. With the exception of two PSA in 2019 tests by a Cardiologist, all were not ultra sensitive.

I asked by Research Professor Medical Oncologist who specializes in Geniturologic Disease, why he did not use ultra sensitive testing in 2005. His answer was, “why would I give you anxiety because you will always have some PSA reading and no treatment options are based on an ultra sensitive test in 2005 outside of a particular clinical trial.” You know that other body organs produce PSA besides the prostate, right? Like urethral glands, adrenal glands, salivary glands, thyroid glands, sweat glands, and even breast tissue. And, you may have some prostatic tissue remaining after your surgery and radiation. Another cause of a detectable or rise in PSA is a urinary tract infection!

Once again, PSA levels below 0.1 ng/mL are of uncertain significance and the fact that you have stayed undetectable since 2017 is indicative that recurrent prostate cancer is very unlikely to exist.

BTW, for example the lowest Quest Labs can read is 0.014. Be happy with your <0.1 PSA tests...... as this is considered undetectable.

I wish you the best and continued many more years of undetectable PSAs.

Gourd Dancer

Bobby999 profile image
Bobby999 in reply to

thank you for your input. I will ask the doctor if i can get a regular PSA test. The ultra sensitive does create anxiety for me. He told me if it gets to .1 we can discuss options.

Helpmate77 profile image
Helpmate77 in reply to Bobby999

My husband is 80 and two years ago his PSA began climbing - this is after surgery in 2000. They cannot find the source (he's Stage 4), but it climbed to about 40, so he is now on Lupron, which has reduced the PSA to a minimal amount in one year. The oncologist said for him to stay on Lupron another year. He really doesn't like Lupron. Hang in there!

Takenca profile image
Takenca

hi Bobby 999. I have experienced a similar situation. I had Prostatectomy in 2009 when I was 46. In 2018 it was determined by osa was.3. We did salvation radiation but it has no effect. I took an ultra sensitive PSA test every 3 months and it was slowly climbing. I did notice a drop when I adopted the KETO diet, no carbs. I have had 2 PET scans with Auxim , but nothing was located. About 10 days ago when my PSA was .76 I had a PET CT scan using PSMA and the locate 2 tumors in my lymph nodes. I had a meeting and we decided to use precision radiation in the 2 tumors. I was told there is no cure, but to monitor and address the condition as it arises.

lowT163 profile image
lowT163

what it amounts to is that they can’t find anything at those psa levels yet. We will just to have to live with it. Got to get to .10 to be detectable at MD Anderson or Mayo even KU Med. I am at .10 for a different reason than you but scans show nothing for sure. Someday the scan guys will have a test to get the smallest amount of cancer. I hope

RMontana profile image
RMontana

PSA doubling time (DT) is more important than PSA level. Keep an eye on this and if it works then PSA value is not as critical as the DT.

healthunlocked.com/active-s...

Here are some studies on uPSA...check these out as see if they help you. There is some evidence that uPSA can be used as a predictive marker for later regression of disease...my doctors have always blown this off, but I now find a lot of good ideas are dismissed without cause.

healthunlocked.com/active-s...

healthunlocked.com/active-s...

healthunlocked.com/active-s...

Also, sulforaphane has been clinically shown to slow down PSA rise, so consider a supplement or grow your own broccoli sprouts...I do both. Here are some good articles on this.

healthunlocked.com/active-s...

healthunlocked.com/active-s...

Good luck...Rick

ron_bucher profile image
ron_bucher

You're relatively young compared to ages of patients included in most studies, so I'd be careful about thinking any particular study applies to your case.

The 7.5 years of undetectable PSA that salvage radiation gave me was well worth any side effects I've experienced. Happy to share more in a private conversation.

Giving Gleason 7 cancer 15 years to grow without treatment seems risky to me. If you think you are going to need treatment, why wait? Every doctor I've met says treatments work better the sooner they are given. And the younger you are the better you can probably tolerate any side effects.

A couple guys in my support group were proud of their "I don't need treatment" approach, and they died from prostate cancer. I'd much rather die of something else.

ron_bucher profile image
ron_bucher

p.s. Beware of any non-medical advisors (including me) definitively telling you what treatments to have or not have. You're the one who has to live with the consequences of your decisions. Opinions from multiple oncologists might be valuable.

Steve507 profile image
Steve507

I agree with Ron Bucher. Those who freely give advice using imperative verbs should be ignored unless they REALLY know what their talking about.At 64 I'm four years out of PC surgery and still less than 0.01 and

I'm my best advocate and going to keep it that way. Vaya Con dios

I’ve remained silent for a long time….

Your subject ‘PSA 5 Years Later’ caught my eye…

I want to help- maybe my story might provide a soothing perspective (maybe not)--- so here goes---

We’re all different- I’m about 5 years-in the Advanced Prostate Cancer Club as well---

I was advanced (distant metastases) Stage-4 inoperable, untreatable (PSA in the thousands) at age 63 - presenting with hematuria more than five years ago-

I was told I had a 30% chance of 3-year survivability--- Two years – then ADT fails – another 6 months on Zytiga and Prednisone and you’re toast-

My initial staging/imaging made use of a Choline C-11 PET scan (high-tech for 2018) – but even then, Ga 68 PSMA-11 imaging was available internationally-

The answer was available Internationally – 10 years ago - I think that I could have skipped the Standard of Care all together--- shocking?

My PSA at one point Five Years Ago (doubling every month) was 2,438 – hence my moniker--- 2439 – whatever – it’s just a snapshot in time

In the long run – your PSA at any point in time is just data - (and I’m all for keeping track – monthly) – information that can/will help you to survive someday

My survival story is likely unique-

I accepted my only options – systemic treatments ADT (Lupron and Casodex) – non-inflammatory diet/exercise/persistence/weight-loss and Chemo-

I lost 45 pounds- regardless Mr. 2,438 was in trouble

The LATITUDE and STAMPEDE clinical trials influenced my Prostate Cancer navigator to recommend ADT and then Taxotere after 90 days…

My PSA dropped from 2,440 to 6 within 90 days – then (after chemo) my nadir PSA eventually 0.18 nl at about 12 months.

But – I didn’t conform---

I refused Lupron after my 3rd shot (9-months) and continued Casodex monotherapy till month 18… then--- I stopped ADT altogether—

Why? Because I wanted a Ga 68 PSMA-11 Pet Scan (available at UCLA) - to see where things were – and surprise-surprise - suprise…

------- I was “all-better” ___ so much so, my diagnosis was “down-graded” I was now eligible for Proton Radiation Therapy

And Proton Radiation Therapy works quite well - (remember to keep a prescription for Pyridium on hand – don’t go to sleep when your peeing blood !)

But I’m Mr. 2,438 remember? Dr Lee said, “It’s like looking down from 5,000 feet and saying you don’t see any mosquitoes – so they aren’t there” - wrong

I’m a scientist – a nuclear physicist – I’m a particle physicist… I do my research and keep my hopes up (you should too)

I kept my eye on The VISION Trial - Ga 68 PSMA-11 imaging facilitating targeted radio ligand therapy

The VISION Trial Study Start Date : May 29, 2018 - Primary Completion Date : January 27, 2021 – is still compiling data even today---

Last year January, my PSA was stable at about 10 - then about this time last year – my PSA started doubling every three weeks (I wasn’t getting any sleep) 10, 20, 40, 80, 160, 320 – in less than five months – my PSA was above 500 –and the cancer had spread to my backbone---

OK – so what… don’t freak out – you have options - I’ve been there and done that-----

- LU177/PSMA radionuclide therapy works – today my PSA is less than 1 and dropping

minute-medical.com/en/psma-...

In this country it’s called Novartis Pluvicto – and maybe (if you’re half dead) Medicaid will cover the costs (I paid about $90,000 in cash)

But don’t give up – don’t let it get you down…. Hopefully - you have options.

Best Regards Mr. 2,438

Bobby -

Re-reading my recent post - above

My PSA Nadir was 0.018 (not 0.18) I had to look it up-- that was many years ago.

Before Chemo My PSA was 6.1 (being measured every month)

Then my PSA was 2.7, then 1.2 -- 0.6 -- 0.3 -- 0.18 -- 0.055 -- 0.028 bottoming out at 0.018____ I think knowing matters - regardless of what anybody says or thinks --- what's wrong with having this data?

My PSA being 0.018 - I refused my 4th Lupron injection and my testosterone began rising____ and my serum testosterone went from being undetectable to 44 then 178 to 319 -- 364 --- 458 But all that time my PSA was stable under 0.3 ___ even when my serum testosterone was normal---

Who does that?..... I did.

I did the ultra-sensitive PSA testing for about 9 months and loved every minute of it.. Nothing wrong with compiling data (it might come in handy someday)

Today-- even though I wasn't offered surgery or radiation therapy as an option 5-years ago - maybe I lucked out (who knows) - I refused their Truss biopsy and cystoscopy . I refused my 4th Lupron shot (I lost one testicle to cancer 20 years ago -but they still haven't chemically castrated me) - my testosterone in back to normal even today - I have a huge - deep-fried prostate... but life goes on----

We're all different ... one-mans PSA being 2,438 might be better than another man's PSA at 24.385--- we're all different

Cancer cells that are PSA expressive correlate to the PSMA enzymes on the surface of cancerous cells --- helping to deliver the Lu177 radiopharmaceutical's Beta-rays that destroy your primary tumor and metastases directly... with minimal damage to the surrounding healthy tissue...

With that kind of treatment being available - who needs chemo ----

Ooooooo (I said a bad thing) - just keep your spirits up - you are likely to survive.

2439

dans_journey profile image
dans_journey

Hi Bobby,

Had a similar situation. I had a radical prostatectomy and just short of the 5-year mark, my undetectable PSA became detectable at 0.05. We increased testing to a 3-month frequency and watched it bounce up and down for that first year. But then it started a slow and stead climb upward. The operative word being "slow." It took 6 years for my PSA to go from 0.05 to the historical definition of biochemical recurrence: 0.2.

At that point, I went for a PSMA PET scan to see if we could see what was happening and, thankfully, it didn't light up. My PSA level was 0.23 at the time of the scan on 30 November 2021.

I met with a radiation oncologist in February and there were some unrelated delays that prevented me from starting treatment until May 2022.

We started with an initial 6-month dose of Eligard on 3 May 2022 and waited for it to kick in before starting 35 sessions of salvage radiation on 7 July 2022. Just before the Eligard injection, the rate of my PSA increase accelerated and my PSA was at 0.36.

My 3-month post-radiation PSA in November 2022 was 0.05, probably more due to the Eligard than the radiation. My PSA in March 2023 was 0.13, which was a bit concerning. I go for another PSA test in March and we'll see where it is then.

I know my radiation oncologist said it could take 18 months or so before we know if the radiation did the job.

By monitoring my PSA rise for nearly 6 years, I avoided the side effects of ADT and SRT and had 6 years of a good quality of life. That was a factor that my team and I considered when deciding to delay treatment. You'll likely have other perspectives and priorities.

Continue to monitor your PSA and your PSA doubling time and go from there.

All the best.

Bobby999 profile image
Bobby999 in reply to dans_journey

thanks. And best of luck

Bcgkelly profile image
Bcgkelly

I understand your anxiety in losing the less than sign from your PSA test. Having said that your PSA is still very very low. Some of the advice given here in my opinion is not good. Having a monthly PSA test at your level is only going to increase anxiety, getting one every month is overkill. Every 3 to 4 months is perhaps right. Rushing into treatment is not necessarily a good thing. They can radiate the Prostate bed and abdominal lymph nodes and still miss where the Cancer is. In Ireland, they will not do anything until your PSA is between .1 and .2 for a first biochemical recurrence. It may take years to reach that level. Before you get treatment, I would definitely recommend getting a PSMA scan to try to find where the Cancer is so that you can get radiotherapy that it is directed at the right area. I followed this path having a PSMA scan in Heidelberg when my PSA was 0.123 and they found the Prostate Cancer in a lymph note which I had stereotactic treatment to. This has given me four years so far. However, my PSA is claiming again slowly. I now realise I should have had hormone treatment at the same time, but I have a fear of it and put it off. I also understand that I was very lucky they found the cancer at such a low level and that 0.5 of a PSA would give you a better chance. Finally while diet and exercise are obviously good for you. It is not a cancer treatment and will not get rid of Prostate Cancer.. Best of luck for the future.

TJGuy profile image
TJGuy

Your small rise over one year is good. You have reoccurrence your not undetectable, but your still at a small PSA amount.

Many people here don't understand the term undetectable. By the old 1980 PSA test capability which couldn't measure below 0.1 your undetectable but not by the newer ultrasensitive PSA tests. So many hospitals including great ones like MAYO still use the old tests. There cheaper when you perform thousands per year it adds up, they don't initiate new treatment when below 0.1, and it gives the hospital some bragging rights towards the patients. But your actually detectable don't let anyone any doctor tell you otherwise.

Continue more frequent ultrasensitive PSA testing say beginning with four times a year. You want to watch and get a handle on it's doubling time. Your doubling at about one year based on your results.

Doubling times can and do change, usually accelerating over time but sometimes decreasing and sometimes remaining stable.

You've appear to have lots of time perhaps many years before any real concern or action needed. But you'll only know by measuring it regularly.

If your PSA continued doubling each year

0.01, 0.02, 0 04, 0.08, 0.16, 0 32, 0.64, 1.28, 2.56, 5.12

You get the picture, but you could receive therapy years from now to reset the clock.

No one wants to have advanced prostate cancer, but your in a good position for one that does.

Crisper, CAR-T, gene therapy, immunotherapy, nano therapy, are all advancing at breakneck speed. mRNA Covid drug development moved research and therapy including cures decades ahead. Some are in clinical trials, the therapy and potential cures are coming.

Bobby999 profile image
Bobby999

Good news. i just received my ultra sensitive PSA 6 months since my last one it is .016 didn’t rise.

in reply to Bobby999

Go Bobby! 👏👏👏👏👍

tn12 profile image
tn12

Sorry to butt in on this, my husband's PSA was 0.01, 0.02, 0.03, then back to 0.02 within 15 months after RP. Am I correct that this is negligible? He had RP Dec 2021 no other treatment for T3B, G3+4

Justfor_ profile image
Justfor_ in reply to tn12

Nothing that can be put down in numbers is"negligible". Yet, a 0.02 or 0.03 post RP is "relaxible". That is, you can rest at ease yourself and your husband and only start wondering when you see 0.06 or above.

tn12 profile image
tn12 in reply to Justfor_

I thought I read some start treatment at 0.03

Justfor_ profile image
Justfor_ in reply to tn12

And the big news lately has been that for localized PCa, primary treatment, or lack of it, the long term survival is at par. Of course, pT3b isn't exactly localized and the 5 year BCR incidence rate is considerable. I am also pT3b, GS 4+5=9, four years out of RP and what I posted previously condenses my personal history (check my bio), my continuing research and last but not least my risk/reward assesment of salvage treatments.

in reply to tn12

Nope! Anything under Psa<.1 is undetectable . 👍

It’s all very good! 👏👏👏

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