Rising PSA after prosectomy

[jdfamily]

Hey guys want your thoughts. I had a prosectomy in March of 2020, which is approximately 18 months ago. All went well with minimal side affects. However, now my psa has been rising slowly, which in most instances indicates not all of the cancer was removed during the prosectomy. My PSA .2. My doctor, whom I really respect says if I get two of these at that level, I need to consider radiation therapy. Would like your thoughts, also what has been experience of some who have had radiation. Thanks, appreciate your prayers.

[Tall_Allen]

There's nothing in your profile about your post-prostatectomy pathology report, so I can't respond.

[jdfamily in reply to Tall_Allen]

Thanks what would you like to see, I will try get it to you.

[Tall_Allen in reply to jdfamily]

Your post-prostatectomy pathology report.

[jdfamily in reply to Tall_Allen]

I will try locate that, can I email that to you.What would be a good email address

[jdfamily in reply to jdfamily]

Here is what I haveFinal diagnosis

Prostrate, prostatectomy:

prostatic adenocarcinoma, gleason score 4+3=7 (gred group 3)

involving approximately 30% of parenchyma

Xtraprostatic extension present

Surgical margins negative for involvement

No evidence of seminal vesicle invasion

Does that help?

[jdfamily in reply to Tall_Allen]

Here is what I haveFinal diagnosis

Prostrate, prostatectomy:

prostatic adenocarcinoma, gleason score 4+3=7 (gred group 3)

involving approximately 30% of parenchyma

Xtraprostatic extension present

Surgical margins negative for involvement

No evidence of seminal vesicle invasion

Does that help?

[Tall_Allen in reply to jdfamily]

Perfect. Lymph nodes weren't sampled? You may find this helpful:

prostatecancer.news/2021/10...

It seems like you fall into the category that may be safely watched. If insurance will pay, you may want a Decipher test if you're on the fence.

[Hidden]

yeah do the radiation and make sure they do the pelvic as a whole also, might as well get it over with

[Justfor_]

Search for my nickname and PSMA PET/CT. I am in a similar situation as yours and have repeatedly posted what I intend to do.

[k538]

My dad was exactly the same with you but reached 0.2 in about 6 months (indicating it was more aggressive). His PSA post operation was 0.08. He had had radiation for 38 sessions (along with hormones) and has been undetectable since May 2020 ( came off hormones in May 2020). He actually didn't find the side effects of radiation too bad except for the fatigue and frequent urination in the final 2 weeks. He continued to work throughout. Might be worth considering radiation as he was also 4+3 and initial PSA of 17 before surgery.

No expert at all, just sharing a family experience thats similar. I wish you well with your decision.

[Shorter]

Tall Allen knows a lot more than I do, so I won't comment on what you should do next.

In my case, I had 4+5=9 and my PSA started rising 22 months post surgery. I had RRP in March of 2018. I ended up with a post surgery issue different than most men and it made me wonder if I wanted to live. My urologist tried to make it look like I was a mental case. I had to swim upstream against the whole medical community to figure it out. I think I have PTSD from it.

Early this year I went to Kansas City to have something EXTREMELY RADICAL done to fix it and get my life back. The Kansas City surgeon talked to my wife while I was in recovery. She said they had never seen what they found inside of me, but that my diagnosis was correct. Hearing that helped my wife a lot with what I had to do.

I think Tall Allen might remember me! 🤣🤣🤣

I can tell you my salvage radiation experience, but everybody is different. Early last year my PSA was .39 and the doubling time was 3 months. I received ADT + 39 sessions of radiation including the whole pelvis. Since radiation, control of my urinary sphincter is a little weaker, but it doesn't give me much trouble after 16 months. My bowel movements were greatly increased for several months, but are back pretty close to normal now. Radiation was inconvenient, but for me it was a walk in the park compared to RRP. So far I am undetectable. Again, YMMV.

[jdfamily in reply to Shorter]

Thank you, what are your long term effects?

[Shorter in reply to jdfamily]

If by long term effects, you are asking about cancer, I am currently undetectable.

I started having panic attacks immediately after my prostate removal. I had to talk to a shrink for awhile in order to get my KC surgery, but I am no longer suffering. I'm not going to give specifics, but lets just say too much was cut from my urethra during prostatectomy. It was like a stretched out rubber band. Surgeon's words, not mine.

The panic attacks stopped after my second surgery. God gave me only one door to open for a cure and some things just can't be undone. The cure affected my marriage for awhile but it is good again.

As for radiation effects, I wear a pad. Sometimes I leak a little after going, as well as when I pass gas. Testosterone is gone, but I am still among the living, and I now want to remain that way.

[jdfamily in reply to Shorter]

Thank you

[rscic]

I had

Prostatectomy in 2019

Microscopic Pos Surgical Margins

Gleason 3+4 = 7 with 85% G3

20% gland involvement

Capsular penetration

No Pos lymph nodes

No seminal vesicle invasion

I received adjuvant radiation beginning 90 days after surgery. My well respected MO/Researcher recommended radiation .... my Urologist did not. I got RT. No side effects & did an IRONMAN triathlon (140.6 miles) about 4 weeks after completing radiation.

Given the same circumstances I would do this again.

I am happy to share more details just ask questions.

[jdfamily in reply to rscic]

Thank you for sharing. I would appreciate any information on both short term and long term effects you experienced

[jdfamily in reply to rscic]

Who was your RO? Where are you located

[rscic in reply to jdfamily]

The more important person in my treatment was my MO. My MO is Dr Vogelzang in the Las Vegas area. He suggested a few RO's. Dr Vogelzang is a well recognized Prostate Cancer Researcher.

[jdfamily in reply to rscic]

Thanks, might try contact him I live in the Denver, area

[rscic in reply to jdfamily]

BTW Dr Vogelzang recommended I have pelvic radiation which covers the entire pelvis as well as the Prostate bed .... this is what I got.

IMO am not a fan of just watching the best indicator we have of Prostate Cancer return (PSA) go higher & higher.

BTW Dr. Vogelzang said to me at one point he would not consider doing any additional treatment after Adjuvant Pelvic Radiation unless PSA reached 0.1 ..... this was in 2019 & I cannot say what he would say now, or what he would say in your case.

IF you are thinking of coming to the Las Vegas area for a consult, my wife & I have made the trip from Denver to the Las Vegas area by car a couple of times & it took about 12 hours (left early from Denver so no traffic).

Hopefully, you will be able to do a consult electronically as this would be easier. If you have to come to the Las Vegas area let me know how I might help. Be aware if Dr Vogelzang is not licensed in Colorado you might have to come to Nevada ..... I am just not sure how the licensing & medical advice works these days ..... I do know in 2012 Radiologists had to be licensed in the state the exam (CT, MRI, Ultrasound, etc.) was performed in order to read the exam ..... again, I am not sure of the requirements today.

[j-o-h-n]

Hello jd, Here I go again.

Radiation - I've posted this before so to those people who have already seen this please forgive me.

Two years after my RPD.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/03/2021 11:17 AM DST

[JRPnSD]

Of course everyone is unique, but for me...4 months post-op my PSA became detectable again (>.01), and since I was GL9/T2N1M0, I was advised by my RO, MO and URO that earlier was better for starting ADT...then 2-4 months after, starting the Pelvic/lymph node radiation (38 sessions)....the target we picked was .2 for the start of that process. I waited for .16...which increased to .18 by the start of ADT (14 months post op). I wish you all the best on your journey.

[Steve507]

Hi JD family.

Mine PSA rose to 0.06 after 18 months and I opted for Salvage Radiation February 2021. My PSA is now 0.005.

Read my bio to get more history on my my illness to compare.

What were your Gleason Scores? Highest PSA prior to RP? Any margin or or other involvement?

[azcanuck]

Hi JD Family,my history is similar in that I had radical prostatectomy and after 2 years rising PSA levels to a similar level, ~0.2. After considering 3 options, 1) monitor and do nothing, 2) Targeted Radiation Therapy and 3) Hormone + Radiation therapy I went with option 2, targeted radiation therapy (38 sessions).

The reason for not opting for hormone injections was the reduced quality of life from side effects versus the additional probability of eliminating the cancer if treating with radiation alone. My father went through hormone + radiation and his side effects were significant and lasted for years. His were extreme fatigue, nausea, weight gain and weakness. Of course everyone will experience effects of hormone therapy in their own way.

I finished my radiation therapy 14 months ago and my PSA levels are zero. Like you, my Urology Oncologist diagnosed some prostate cancer that likely remained post surgery as the culprit for rising PSA post surgery.

I did have a few side effects from the radiation treatment, constipation and a reduction in sexual function. The radiation both irritates the bowel region and nerves in the pelvic region.

The good news is that the radiation treatment was effective at removing any remaining prostate cancer cells. And the PSA levels have remained at zero.

Good luck on your path to recovery,

Hope all goes well!

[jdfamily in reply to azcanuck]

Thank you so much. Doing my research I also am coming to the conclusion that I will do the radition but not the hormone injections. From what I have seen, and I might be wrong, the injections do not seem to benefit the radiation, but often cause severe side effects.

[gamma909]

Looks like you have plenty of good responses. Not sure what your oncologist says but I'd assume you'd want to start keeping track of PSA doubling times in order to determine how quickly the PCa is progressing. If it were me, I would want to collect more information prior to deciding on treatment - where exactly is the cancer and what type of cancer is it. For the former, PSMA PET scan or other scans could help pinpoint. For the latter, consider some genomic testing. Good luck.

[jdfamily in reply to gamma909]

Thank you for your response. Right now more information first. Then is seems a couple choices, observe for a longer period of time; radiation with hormones; radiation without hormones, and finally do nothing. Still thinking and praying about this decision and seeing more physicians

[gamma909]

If you decide on treatment, I would want to make sure of is that you are treating the PCa in the right place - makes little sense to undergo radiation if the cancer cells are not actually around the prostate bed. That's where some of the additional scans come into play.