Rising PSA years after radical prostatectomy

Posted by olanordman @olanordman, Feb 22, 2021

I am 60 years and I had radical prostatectomy on 23rd Nov 2018. I was told out of the 15 lymph nodes taken only one was affected less than a millimetre. It was Gleason score 7B with PSA around 13 at time of surgery but 11 at time of diagnosis in June 2018.

The PSA been fluctuating between 0.09 and 0.18 since surgery on 23rd November 2018
I have no incontinence as well as Erectile dysfunction. I take hypertension medication – Norvask Amlodipine 5mg daily and Cetirizine 5mg for allergy. Below are some of the test results. I have many of these test results – a few below
Jan 2019: 0.11
April 2019: 0.11
June 2019: 0.09
August 2019: 0.12
December 2019: 0.12
April 2020: 0.12
August 2020: 0.11
October 2020: 0.17
December 2020: 0.15
February 2021: 0.18

I am worried the cancer may be returning or might have spread. I met my doctor today and expressed my concerns. He has agreed to refer me to the hospital where I had the surgery. Any suggestions based on this brief history?

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

@scullrower

I’m with kujhawk. Get the best imaging you can as soon as you can. I was fortunate enough to get the PSMA Gallium68 scan at PSA 0.10 and 4 cancerous lymph nodes were found. I got radiation and went on Nubeqa. Latest PSA <0.008. Good scans lead the treatment. Don’t treat blindly. If you can, get an opinion from Dr. Kwon at Mayo. He’s aggressive. I love his attitude.

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I need to make a correction. I was scanned at UCLA when my PSA had risen to 1.0 not 0.10. Sorry for the error.

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I met with my urologist in about 2011 0r 2012. With out other than a procto exam he said my prostate was full of cancer had to be removed. I explained Several friends, and relatives had the surgery resulting in a lifetime of having to use catheters. My question is there any assurance that, that end result could be avoided and was told no. was given Finasteride pills to Shrink the prostate and went several years with some increases in need to urinate more often. I then discussed the / o,f having a biopsy to check what the cancer was doing which, wads done. the pictures showed 3 small dots the size of a pinhead which was told was cancer. During the intervening time psa tests showed levels from .04 up .12 , with some increased frequency of need to urinate. the last psa done approx 2 mos ago brings no response from my Doctor.
What should I do confront the Doctor or go get another opinion?
Conrad Evans

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I’m a 2019 graduate of Mayo proton treatment 😁. I would get another doc, ask about a PET scan to look for metastasizes. Best wishes!

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Thanks for sharing. I don’t have any suggestions; however, my situation is very similar and I’m very interested in what you decide to do. My PSA before surgery was 4.3. I had a radical prostatectomy on 7 January 2022. Eight lymph nodes were tested. One had a Gleason score of 7. The Mayo Clinic suggested radiation and hormone therapy. However, 39 radiation treatments plus Lupron for two years was more than I wanted to sign up for in order to address this issue. I’m continent now but have absolutely no erectile function. I’m not on any medications. I had a PSA test six weeks after surgery. The result was encouraging: my PSA level was undetectable: <0.01. I’m getting tested every three months. Since I’m 73 and want to avoid all the treatment side effects, I decided to do active surveillance and monitor my levels, just like you have. Hopefully, my PSA remains low.
Thanks for sharing your history.

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IMHO, one of the problems with prostate cancer (PCa) is having doctors whose knowledge and skills are "silo'd" - meaning they know what they do well (and hopefully do it skillfully) and know little about other treatments.
So most urologists are surgeons and don't know much about alternative primary treatments (i.e. traditional radiation, proton beam radiation, brachytherapy, etc) Also the 'technology' is moving quickly, so a study of people who had brand x treatment 10 years ago; their survival, reoccurrence, etc. doesn't give definitive answers. And that doesn't even address all the variables of what/how patients present. IMHO: surgeon's are NOT the people to ask about post operative recurrence and treatment. Simply said, its not their specialty.

My own story: In August 2019 my PSA had risen to 8.0 (about a .9 increase/yr). I didn't know that the fact that I was on finasteride meant that my PSA score should probably have been doubled. Due to some office procedure bumbling my urologist didn't seem to know that I was on Finasteride. Also, a previous year genetic test suggested a low probability of PCa. I was fortunate that our local hospital was trialing the equipment to get a multi-parametric MRI which showed a prostate tumor, anteriorly located (i.e. not detectable with a DRE). The local urologist suggested an in office biopsy - ultrasound guided with the intention to take about 9 samples (cores). I chose to be seen at the Mayo Clinic in MN where I had a fusion guided biopsy (combines MRI and ultrasound info) where they took ~23 cores.
Analysis of the cores showed the tumor (fairly distinct) and gave me a Gleason score of 4+3.

I opted for Proton Beam Treatments at the Mayo MN facility early Feb 2020. My treatment consisted of five PBT sessions spread over two weeks. I also opted for SpaceOar insertion. My understanding is that the five PBT sessions give a total radiation equal to what is given in total to some facilities (?Mayo AZ) where treatment is 5 weeks of 5 day a week treatment. I also took a four month shot of Lupron (Androgen Deprivation Therapy).

***I am a aware of some PBT facilities that use the 25 treatment regimen (including, I think, Mayo AZ) One presumes that the longer & lower does treatments are presumed to do less ancillary damage or injury. But, 5 treatments vs 25 treatments may also take it out of the possible for some patients (even if the therapy charge is identical. I thin that Mayo has a commitment to charge PBT at the same rate as standard xray treatment - that is not true of all PBT facilities.

So, two years later my PSA scores seem to be staying just above detectable.
I think of myself as "in remission," not cured, and I hope that my remission lasts the rest of my life.

I have minor moments of urinary urgency that I find manageable; I take .4 mg of Tamulosin 2X/dy which helps with flow and urgency. A colonoscopy last fall suggested that I have some irritation in my lower bowel. I think that causes some minor problems - mostly mitigated by diet. I have ED about the same as before treatment.

Alternative Story: A good friend who chose a top urologist in his large urban area (and he had the means to determine who was tops). He had a Davinci robot assisted radical prostatectomy. He now has reasonable urinary continence; finding some foods make him have many moments of urgency. He reports that he has no erectile function (and that is important to him) He has tried various medications to mitigate the ED and they have not helped.. So far his PSA numbers appear to be good.

More thoughts:
a) I think that new nuclear medicine scans create a much improved environment for detecting PCa metastases and you should work with a doctor/clinic where they are open to that (even if not offered where you/they are).

b) Can't say definitively, not being a doctor, but being on finasteride may suppress your PSA numbers. You might ask about switching to Tamulosin for a period of time to see what being off finasteride does to your PSA (might take six months) and if Tamulosin will work for you.

c) I would look for a medical oncologist who might have a specialty in PCa. Hopefully someone at a large enough facility that they could direct you on to other specialists for diagnosis and possible treatment.

** having "to use catheters for the rest of my life" - using a catheter might be for two reasons:
1. Some men (and women) develop a neurogenic bladder - meaning they can't empty their bladder. Sometimes related to other disease (Parkinsons and ...) and some men develop this after a TURP (transurethral resection of the prostate) collapse of the urethra. Incontinence is not the issue, emptying is the issue.

2. With some men, who have 'severe' unitary incontinence there is no control. So the catheter would be "in- dwelling" (always inserted) emptying to a bag - strapped to ones' leg. I read recently of a prothesis where a 'ring' encircles the urethra, closing it off, and there is a "pump" inserted into the scrotum. Pumping expands the ring and allows the user to empty the bladder and then the ring is deflated. Question would be the success rate, complications, leakage etc. Maybe "better" than having to live with an in-dwelling catheter.

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@colleenyoung

@olanordman, you may also wish to read these related discussions:
- Post prostatectomy: What do rising PSA levels mean? https://connect.mayoclinic.org/discussion/post-prostatectomy/
- High PSA three years post op https://connect.mayoclinic.org/discussion/high-psa-three-years-post-op/
- PSA numbers: Questions about new treatments https://connect.mayoclinic.org/discussion/psa-numbers/
- Follow up after proton beam treatment: GREAT PSA NUMBER https://connect.mayoclinic.org/discussion/great-psa-number/

You ask a good question. What can rising PSA levels means years after having had a prostatectomy?
There are several reasons why one's PSA level may rise after being stable for a time. This article explains it well:
– PSA levels after prostatectomy https://www.medicalnewstoday.com/articles/323899.php

Here's an excerpt from the article:
"Seeing a rise in PSA level does not always mean that prostate cancer is returning or spreading. The test is very sensitive and can pick up small changes in PSA levels. Doctors will usually want to know how quickly levels of PSA in the blood are rising. To find this out, a person will need to have regular PSA tests. If levels of PSA remain stable or rise very slowly, treatment may not be necessary.

In some cases, high PSA levels in the blood are not due to cancer cells. Some factors that can affect PSA levels include:
– older age
– ethnicity
– medication
A doctor will take these factors and the person's medical history into account when looking at test results. This can help them decide if PSA levels are high enough to cause concern."

The PSA test alone is not enough to determine cause or next steps. Your oncology team will consult with you and likely order other tests. Did you have other treatments after surgery?

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Hi. I had radical surgery Oct 2019. Lots of high numbers. Gene testing predicted 5.9%chance of reoccurrence in 10 years. 16 months later cancer came back in lower abdomen. 35 Radiation treatments, radiation cystitis, Peeing blood and huge clots. 40 hyperbaric oxygen chamber therapy sessions to stop bleeding. Lots of other problems. Total incontinence. Had artificial sphincter installed Aug 2021. Failed at 3 weeks. Dec surgery to switch sides of the pump. Fail. Cuff had eroded into my urethra, causing infections. Feb 22 had it all removed. One failure after another. PSA after 2 years is still undetectable. The only good thing out of all this. Good luck,

REPLY
@jimcinak

IMHO, one of the problems with prostate cancer (PCa) is having doctors whose knowledge and skills are "silo'd" - meaning they know what they do well (and hopefully do it skillfully) and know little about other treatments.
So most urologists are surgeons and don't know much about alternative primary treatments (i.e. traditional radiation, proton beam radiation, brachytherapy, etc) Also the 'technology' is moving quickly, so a study of people who had brand x treatment 10 years ago; their survival, reoccurrence, etc. doesn't give definitive answers. And that doesn't even address all the variables of what/how patients present. IMHO: surgeon's are NOT the people to ask about post operative recurrence and treatment. Simply said, its not their specialty.

My own story: In August 2019 my PSA had risen to 8.0 (about a .9 increase/yr). I didn't know that the fact that I was on finasteride meant that my PSA score should probably have been doubled. Due to some office procedure bumbling my urologist didn't seem to know that I was on Finasteride. Also, a previous year genetic test suggested a low probability of PCa. I was fortunate that our local hospital was trialing the equipment to get a multi-parametric MRI which showed a prostate tumor, anteriorly located (i.e. not detectable with a DRE). The local urologist suggested an in office biopsy - ultrasound guided with the intention to take about 9 samples (cores). I chose to be seen at the Mayo Clinic in MN where I had a fusion guided biopsy (combines MRI and ultrasound info) where they took ~23 cores.
Analysis of the cores showed the tumor (fairly distinct) and gave me a Gleason score of 4+3.

I opted for Proton Beam Treatments at the Mayo MN facility early Feb 2020. My treatment consisted of five PBT sessions spread over two weeks. I also opted for SpaceOar insertion. My understanding is that the five PBT sessions give a total radiation equal to what is given in total to some facilities (?Mayo AZ) where treatment is 5 weeks of 5 day a week treatment. I also took a four month shot of Lupron (Androgen Deprivation Therapy).

***I am a aware of some PBT facilities that use the 25 treatment regimen (including, I think, Mayo AZ) One presumes that the longer & lower does treatments are presumed to do less ancillary damage or injury. But, 5 treatments vs 25 treatments may also take it out of the possible for some patients (even if the therapy charge is identical. I thin that Mayo has a commitment to charge PBT at the same rate as standard xray treatment - that is not true of all PBT facilities.

So, two years later my PSA scores seem to be staying just above detectable.
I think of myself as "in remission," not cured, and I hope that my remission lasts the rest of my life.

I have minor moments of urinary urgency that I find manageable; I take .4 mg of Tamulosin 2X/dy which helps with flow and urgency. A colonoscopy last fall suggested that I have some irritation in my lower bowel. I think that causes some minor problems - mostly mitigated by diet. I have ED about the same as before treatment.

Alternative Story: A good friend who chose a top urologist in his large urban area (and he had the means to determine who was tops). He had a Davinci robot assisted radical prostatectomy. He now has reasonable urinary continence; finding some foods make him have many moments of urgency. He reports that he has no erectile function (and that is important to him) He has tried various medications to mitigate the ED and they have not helped.. So far his PSA numbers appear to be good.

More thoughts:
a) I think that new nuclear medicine scans create a much improved environment for detecting PCa metastases and you should work with a doctor/clinic where they are open to that (even if not offered where you/they are).

b) Can't say definitively, not being a doctor, but being on finasteride may suppress your PSA numbers. You might ask about switching to Tamulosin for a period of time to see what being off finasteride does to your PSA (might take six months) and if Tamulosin will work for you.

c) I would look for a medical oncologist who might have a specialty in PCa. Hopefully someone at a large enough facility that they could direct you on to other specialists for diagnosis and possible treatment.

** having "to use catheters for the rest of my life" - using a catheter might be for two reasons:
1. Some men (and women) develop a neurogenic bladder - meaning they can't empty their bladder. Sometimes related to other disease (Parkinsons and ...) and some men develop this after a TURP (transurethral resection of the prostate) collapse of the urethra. Incontinence is not the issue, emptying is the issue.

2. With some men, who have 'severe' unitary incontinence there is no control. So the catheter would be "in- dwelling" (always inserted) emptying to a bag - strapped to ones' leg. I read recently of a prothesis where a 'ring' encircles the urethra, closing it off, and there is a "pump" inserted into the scrotum. Pumping expands the ring and allows the user to empty the bladder and then the ring is deflated. Question would be the success rate, complications, leakage etc. Maybe "better" than having to live with an in-dwelling catheter.

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@jimcinak Hi Jim, your experience is nearly exactly like mine, I could have written it. I'm still <.1 after my SBRT in 9/2020 of 5 treatments over the course of 10 days. I too have some urinary urgency with a zero sex drive, but being 74 I'll take it. My Testosterone level is very low and my Urinary Oncologist at Mayo Rochester says that my current level is now my new baseline. He is against supplementing my T-level since he believes that it feeds any cancer that could be hiding somewhere. Best of luck.

Dave

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@jimcinak

IMHO, one of the problems with prostate cancer (PCa) is having doctors whose knowledge and skills are "silo'd" - meaning they know what they do well (and hopefully do it skillfully) and know little about other treatments.
So most urologists are surgeons and don't know much about alternative primary treatments (i.e. traditional radiation, proton beam radiation, brachytherapy, etc) Also the 'technology' is moving quickly, so a study of people who had brand x treatment 10 years ago; their survival, reoccurrence, etc. doesn't give definitive answers. And that doesn't even address all the variables of what/how patients present. IMHO: surgeon's are NOT the people to ask about post operative recurrence and treatment. Simply said, its not their specialty.

My own story: In August 2019 my PSA had risen to 8.0 (about a .9 increase/yr). I didn't know that the fact that I was on finasteride meant that my PSA score should probably have been doubled. Due to some office procedure bumbling my urologist didn't seem to know that I was on Finasteride. Also, a previous year genetic test suggested a low probability of PCa. I was fortunate that our local hospital was trialing the equipment to get a multi-parametric MRI which showed a prostate tumor, anteriorly located (i.e. not detectable with a DRE). The local urologist suggested an in office biopsy - ultrasound guided with the intention to take about 9 samples (cores). I chose to be seen at the Mayo Clinic in MN where I had a fusion guided biopsy (combines MRI and ultrasound info) where they took ~23 cores.
Analysis of the cores showed the tumor (fairly distinct) and gave me a Gleason score of 4+3.

I opted for Proton Beam Treatments at the Mayo MN facility early Feb 2020. My treatment consisted of five PBT sessions spread over two weeks. I also opted for SpaceOar insertion. My understanding is that the five PBT sessions give a total radiation equal to what is given in total to some facilities (?Mayo AZ) where treatment is 5 weeks of 5 day a week treatment. I also took a four month shot of Lupron (Androgen Deprivation Therapy).

***I am a aware of some PBT facilities that use the 25 treatment regimen (including, I think, Mayo AZ) One presumes that the longer & lower does treatments are presumed to do less ancillary damage or injury. But, 5 treatments vs 25 treatments may also take it out of the possible for some patients (even if the therapy charge is identical. I thin that Mayo has a commitment to charge PBT at the same rate as standard xray treatment - that is not true of all PBT facilities.

So, two years later my PSA scores seem to be staying just above detectable.
I think of myself as "in remission," not cured, and I hope that my remission lasts the rest of my life.

I have minor moments of urinary urgency that I find manageable; I take .4 mg of Tamulosin 2X/dy which helps with flow and urgency. A colonoscopy last fall suggested that I have some irritation in my lower bowel. I think that causes some minor problems - mostly mitigated by diet. I have ED about the same as before treatment.

Alternative Story: A good friend who chose a top urologist in his large urban area (and he had the means to determine who was tops). He had a Davinci robot assisted radical prostatectomy. He now has reasonable urinary continence; finding some foods make him have many moments of urgency. He reports that he has no erectile function (and that is important to him) He has tried various medications to mitigate the ED and they have not helped.. So far his PSA numbers appear to be good.

More thoughts:
a) I think that new nuclear medicine scans create a much improved environment for detecting PCa metastases and you should work with a doctor/clinic where they are open to that (even if not offered where you/they are).

b) Can't say definitively, not being a doctor, but being on finasteride may suppress your PSA numbers. You might ask about switching to Tamulosin for a period of time to see what being off finasteride does to your PSA (might take six months) and if Tamulosin will work for you.

c) I would look for a medical oncologist who might have a specialty in PCa. Hopefully someone at a large enough facility that they could direct you on to other specialists for diagnosis and possible treatment.

** having "to use catheters for the rest of my life" - using a catheter might be for two reasons:
1. Some men (and women) develop a neurogenic bladder - meaning they can't empty their bladder. Sometimes related to other disease (Parkinsons and ...) and some men develop this after a TURP (transurethral resection of the prostate) collapse of the urethra. Incontinence is not the issue, emptying is the issue.

2. With some men, who have 'severe' unitary incontinence there is no control. So the catheter would be "in- dwelling" (always inserted) emptying to a bag - strapped to ones' leg. I read recently of a prothesis where a 'ring' encircles the urethra, closing it off, and there is a "pump" inserted into the scrotum. Pumping expands the ring and allows the user to empty the bladder and then the ring is deflated. Question would be the success rate, complications, leakage etc. Maybe "better" than having to live with an in-dwelling catheter.

Jump to this post

Rereading my story, I should add a tad more information:
I believe as dandl48Dave writes below, that my treatment was SBRT with proton radiation. For a full accounting, in addition to the SpaceOar insertion (helps to separate the prostate and the bowel) they inserted some carbon 'markers' which are used in positioning the PBT equipment. Part of the pre treatment process was to create a mold which meant that my legs and lower torso were in the same position for each treatment.
Also, before each treatment, I went to an area at Mayo where they helped me with an enema. It really wasn't a big deal - again the goal is to separate to bowel and prostate/treatment area. A friend at home chose standard photon radiation and had to self administer an enema for each treatment (~25) and had some problems. Mayo made it much easier and more matter of fact.
I have kiddingly said that I spent more time taking my clothes off and on then I did in the PBT treatment area. It was very easy.

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@jimcinak Will you stop reading my memories of the SBRT. LOL; I too had the SpaceOrb, the mold the marker placement and enema before each treatment. And yes, it did seem to take longer to get undressed and dressed than the actual treatment.

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@olanordman

Good information. Have you had radical prostatectomy - postrate removed? I thought without a prostate the bench marck was 0.2 for salvage treatment.

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Not necessarily it depends on velocity and doubling time a good of window of time is to not let it exceed .4
Then consider EBRT in conjunction with hormone therapy.

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