1. < Prostate Cancer

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.

ddun1953 | @ddun1953 | Mar 5 9:46am

I was told to have a PSMA Pet Scan done if the PSA reading was over .2. At that point, see where any spots are and if where the prostate was, Lupron Shots and if outside where the prostate was then use Targeted Beam Radiation at the spot location and poison the little bastar--
My Surgery RP was Aug. 3rf and first BW reading was .022 and the second one was. .061
My only son just got diagnosed with Paraganglioma at age 41 and healthy bumped out badly.

REPLY
jsh327 | @jsh327 | Mar 5 7:14am

….there are also several online resources at PCF and PCRI that discuss treatment options for this specific situation.

REPLY
jsh327 | @jsh327 | Mar 5 7:12am

I recommend getting an appointment with an oncologist that specializes in prostate cancer. You are presently below the recurrence threshold of 0.2 ng/ml, but the rising trend means it is time to discuss treatment options with a specialist that can talk you through them. With the slowly rising PSA, you have time to discuss and decide on your next treatment.

REPLY
Scottyrussell | @scottyrussell | Mar 5 5:30am

You probably have read enough but here’s my take on your rising PSA from experience, your doubling factor is 2+ years and you are not yet at the lower threshold of a PSA of .2. From my experience this is a monitor situation. Good luck and don’t hurry the situation. Mine came back and diagnosed as an aggressive recurrent prostate cancer. I had 39 radiation treatments and the anti hormonal shot Lupron. I tell you that it is NO walk in the park. My best to you and the person who is your support person.

REPLY
bettwils16 | @bettwils16 | Mar 4 10:40am

Need a PSMA PET Scan, might be a biochemical recurrence in the prostate bed. My PSA slowly climbed to .24 a few years after a Robotic Prostatectomy. PSMA was neg. I received 38 radiation treatments, PSA now .02 for a year now.

REPLY
michaelcharles | @michaelcharles | Mar 4 8:31am
In reply to @jackiepie "This is an update of a previous post that I submitted on Nov 12, 2023. Since..." + (show)
@jackiepie

This is an update of a previous post that I submitted on Nov 12, 2023. Since then I have had two more PSA tests: 0.11 on 1/02/24 and 0.10 2/07/24; my Decipher test score came in at 0.36 (suggesting low genomic risk).
I have consulted with a medical oncologist, two radiation oncologists and my urologist. All four feel that the PSA results suggest that there is, or will be, a biochemical recurrence depending on the definition of biochemical recurrence one uses. The medical oncologist said that based on the Decipher result, no hormone treatment is necessary with salvage therapy at this time.
This coming week I will undergo a PET/CT tumor PSMA(w/Dose) to see if the cancer can be detected. At this low level of PSA it seems unlikely to me that they will find anything. If that turns out to be the case and because I had (three) positive margins after the prostatectomy, I think the radiation would be mainly confined to the prostate bed.
My concerns are two:
1) Should I go ahead and undergo salvage radiation this spring, or wait a bit, perhaps, until the fall to do it? The Decipher score suggests that my cancer is not aggressive and the PSA doubling time does not appear to be that fast (see my Nov. 12 post for more PSA results). On the other hand, the sooner I get this treated the higher the probability of curing the cancer.
2) Should I do photon therapy (EBRT)or proton therapy? Both approaches appear to be of equal effectiveness but the proton therapy supposedly has less side effects. Proton therapy is expensive and I would have to check that it would be covered by my insurance. In addition, the nearest proton therapy location is about 60 miles (about 70 minutes) away while the nearest photon therapy is about 6 miles (12 minutes) away.
I mainly worry about the side effects from salvage therapy. I have no urinary incontinence nor bowel issues from the prostatectomy and I certainly want to avoid them. I do understand however that salvage therapy can cause such issues. I could not find any data on the percentage of people who have these issues after salvage therapy.
Any thoughts or advice from the many who have faced these issues would be greatly appreciated,

Jump to this post

Additional and very personal/individual feeling to share about ADT.

As a PCa suffer, I worry about what I do, as well as what I do not do.

No one wants ADT. Side effects are reported on this site as anywhere from minor to significant.

My SEs from Orgovyx were mild to moderate.

Accepted my Rad Onc's recommendation of 4 mos of ADT. And did not ask for more/longer course.

And I worry if I should have asked to extend ADT by additional 2 months.

I would have worried if no ADT had been recommended.

Best wishes for your choices.

REPLY
michaelcharles | @michaelcharles | Mar 4 8:16am
In reply to @jackiepie "This is an update of a previous post that I submitted on Nov 12, 2023. Since..." + (show)
@jackiepie

This is an update of a previous post that I submitted on Nov 12, 2023. Since then I have had two more PSA tests: 0.11 on 1/02/24 and 0.10 2/07/24; my Decipher test score came in at 0.36 (suggesting low genomic risk).
I have consulted with a medical oncologist, two radiation oncologists and my urologist. All four feel that the PSA results suggest that there is, or will be, a biochemical recurrence depending on the definition of biochemical recurrence one uses. The medical oncologist said that based on the Decipher result, no hormone treatment is necessary with salvage therapy at this time.
This coming week I will undergo a PET/CT tumor PSMA(w/Dose) to see if the cancer can be detected. At this low level of PSA it seems unlikely to me that they will find anything. If that turns out to be the case and because I had (three) positive margins after the prostatectomy, I think the radiation would be mainly confined to the prostate bed.
My concerns are two:
1) Should I go ahead and undergo salvage radiation this spring, or wait a bit, perhaps, until the fall to do it? The Decipher score suggests that my cancer is not aggressive and the PSA doubling time does not appear to be that fast (see my Nov. 12 post for more PSA results). On the other hand, the sooner I get this treated the higher the probability of curing the cancer.
2) Should I do photon therapy (EBRT)or proton therapy? Both approaches appear to be of equal effectiveness but the proton therapy supposedly has less side effects. Proton therapy is expensive and I would have to check that it would be covered by my insurance. In addition, the nearest proton therapy location is about 60 miles (about 70 minutes) away while the nearest photon therapy is about 6 miles (12 minutes) away.
I mainly worry about the side effects from salvage therapy. I have no urinary incontinence nor bowel issues from the prostatectomy and I certainly want to avoid them. I do understand however that salvage therapy can cause such issues. I could not find any data on the percentage of people who have these issues after salvage therapy.
Any thoughts or advice from the many who have faced these issues would be greatly appreciated,

Jump to this post

My recovery from salvage treatment has been very good.

RP Aug 2022
PSA 90 days postop .19
Surgical recovery excellent.

Feb - June 2023:

Salvage radiation photon IMRT 37 treatments over 8 wks at Johns Hopkins Baltimore to whole prostate (WPRT) and pelvic lymph nodes.
JH also has proton in DC.

Together with short term adt 4 mos (see SPPORT trial).

"Sweet spot " for BCR tx .2 - .4/.5.
Trend is to tx at lower PSA.

IMRT photon and Proton deemed equivalent at this time.

Sorry to hear about possible BCR.

Any side effects from salvage radiation tx developed weeks into tx and resolved 4 wks or so after completion.

ADT side effects dissipated over 4 months after completion of tx.

Good luck with your future tx and decisions.

Sounds like you are being followed well and have choices available.

REPLY
perrychristopher | @perrychristopher | Mar 4 7:51am
In reply to @jackiepie "This is an update of a previous post that I submitted on Nov 12, 2023. Since..." + (show)
@jackiepie

This is an update of a previous post that I submitted on Nov 12, 2023. Since then I have had two more PSA tests: 0.11 on 1/02/24 and 0.10 2/07/24; my Decipher test score came in at 0.36 (suggesting low genomic risk).
I have consulted with a medical oncologist, two radiation oncologists and my urologist. All four feel that the PSA results suggest that there is, or will be, a biochemical recurrence depending on the definition of biochemical recurrence one uses. The medical oncologist said that based on the Decipher result, no hormone treatment is necessary with salvage therapy at this time.
This coming week I will undergo a PET/CT tumor PSMA(w/Dose) to see if the cancer can be detected. At this low level of PSA it seems unlikely to me that they will find anything. If that turns out to be the case and because I had (three) positive margins after the prostatectomy, I think the radiation would be mainly confined to the prostate bed.
My concerns are two:
1) Should I go ahead and undergo salvage radiation this spring, or wait a bit, perhaps, until the fall to do it? The Decipher score suggests that my cancer is not aggressive and the PSA doubling time does not appear to be that fast (see my Nov. 12 post for more PSA results). On the other hand, the sooner I get this treated the higher the probability of curing the cancer.
2) Should I do photon therapy (EBRT)or proton therapy? Both approaches appear to be of equal effectiveness but the proton therapy supposedly has less side effects. Proton therapy is expensive and I would have to check that it would be covered by my insurance. In addition, the nearest proton therapy location is about 60 miles (about 70 minutes) away while the nearest photon therapy is about 6 miles (12 minutes) away.
I mainly worry about the side effects from salvage therapy. I have no urinary incontinence nor bowel issues from the prostatectomy and I certainly want to avoid them. I do understand however that salvage therapy can cause such issues. I could not find any data on the percentage of people who have these issues after salvage therapy.
Any thoughts or advice from the many who have faced these issues would be greatly appreciated,

Jump to this post

I'd ask about the viability of Proton Beam therapy when cancer cells are not located definitively. Since your numbers are low it's doubtful the PSMA scan will locate anything (which is great). The radiation will be most likely located on the prostate bed and pelvic lymph node area. Photon beam has a wider spread which I think would be used in a case like yours but I'm not a doctor either. Definitely worth a call to the Proton Beam center closest to you to ask.

REPLY
melcanada | @melcanada | Mar 4 6:23am
In reply to @jackiepie "This is an update of a previous post that I submitted on Nov 12, 2023. Since..." + (show)
@jackiepie

This is an update of a previous post that I submitted on Nov 12, 2023. Since then I have had two more PSA tests: 0.11 on 1/02/24 and 0.10 2/07/24; my Decipher test score came in at 0.36 (suggesting low genomic risk).
I have consulted with a medical oncologist, two radiation oncologists and my urologist. All four feel that the PSA results suggest that there is, or will be, a biochemical recurrence depending on the definition of biochemical recurrence one uses. The medical oncologist said that based on the Decipher result, no hormone treatment is necessary with salvage therapy at this time.
This coming week I will undergo a PET/CT tumor PSMA(w/Dose) to see if the cancer can be detected. At this low level of PSA it seems unlikely to me that they will find anything. If that turns out to be the case and because I had (three) positive margins after the prostatectomy, I think the radiation would be mainly confined to the prostate bed.
My concerns are two:
1) Should I go ahead and undergo salvage radiation this spring, or wait a bit, perhaps, until the fall to do it? The Decipher score suggests that my cancer is not aggressive and the PSA doubling time does not appear to be that fast (see my Nov. 12 post for more PSA results). On the other hand, the sooner I get this treated the higher the probability of curing the cancer.
2) Should I do photon therapy (EBRT)or proton therapy? Both approaches appear to be of equal effectiveness but the proton therapy supposedly has less side effects. Proton therapy is expensive and I would have to check that it would be covered by my insurance. In addition, the nearest proton therapy location is about 60 miles (about 70 minutes) away while the nearest photon therapy is about 6 miles (12 minutes) away.
I mainly worry about the side effects from salvage therapy. I have no urinary incontinence nor bowel issues from the prostatectomy and I certainly want to avoid them. I do understand however that salvage therapy can cause such issues. I could not find any data on the percentage of people who have these issues after salvage therapy.
Any thoughts or advice from the many who have faced these issues would be greatly appreciated,

Jump to this post

Hope your on Zolodex ASAP
Get margins radiated Spot radiation if in Lumbar

If PSA rises look at Enzalutamide / Xtandi PSA is low from what you write

REPLY
hbp | @hbp | Mar 3 7:30pm
In reply to @jackiepie "This is an update of a previous post that I submitted on Nov 12, 2023. Since..." + (show)
@jackiepie

This is an update of a previous post that I submitted on Nov 12, 2023. Since then I have had two more PSA tests: 0.11 on 1/02/24 and 0.10 2/07/24; my Decipher test score came in at 0.36 (suggesting low genomic risk).
I have consulted with a medical oncologist, two radiation oncologists and my urologist. All four feel that the PSA results suggest that there is, or will be, a biochemical recurrence depending on the definition of biochemical recurrence one uses. The medical oncologist said that based on the Decipher result, no hormone treatment is necessary with salvage therapy at this time.
This coming week I will undergo a PET/CT tumor PSMA(w/Dose) to see if the cancer can be detected. At this low level of PSA it seems unlikely to me that they will find anything. If that turns out to be the case and because I had (three) positive margins after the prostatectomy, I think the radiation would be mainly confined to the prostate bed.
My concerns are two:
1) Should I go ahead and undergo salvage radiation this spring, or wait a bit, perhaps, until the fall to do it? The Decipher score suggests that my cancer is not aggressive and the PSA doubling time does not appear to be that fast (see my Nov. 12 post for more PSA results). On the other hand, the sooner I get this treated the higher the probability of curing the cancer.
2) Should I do photon therapy (EBRT)or proton therapy? Both approaches appear to be of equal effectiveness but the proton therapy supposedly has less side effects. Proton therapy is expensive and I would have to check that it would be covered by my insurance. In addition, the nearest proton therapy location is about 60 miles (about 70 minutes) away while the nearest photon therapy is about 6 miles (12 minutes) away.
I mainly worry about the side effects from salvage therapy. I have no urinary incontinence nor bowel issues from the prostatectomy and I certainly want to avoid them. I do understand however that salvage therapy can cause such issues. I could not find any data on the percentage of people who have these issues after salvage therapy.
Any thoughts or advice from the many who have faced these issues would be greatly appreciated,

Jump to this post

Good Luck Jackie. If this were me, I would want the best radiation treatment possible and sooner is better than later. Whatever insurance covers is good and I would pay what remains. A 60 mile drive would be doable ( I drive more than that to UCLA at least every 3 months and sometimes more often ). A longer life and a quality life is worth the inconvenience and expense for me.

REPLY
View MoreView Less
Please sign in or register to post a reply.