Potential biochemical recurrence post... - Advanced Prostate...

Advanced Prostate Cancer

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Potential biochemical recurrence post radical prostatectomy, looking for perspective on the outcomes and treatments.

Stevescut profile image
22 Replies

63-year old Male, months shy of 5-year mark of the radical prostatectomy, showed PSA of .08 in January then .07 in March. Originally had up to Gleason 9’s.

I know it’s not technically a recurrence until .2, and doubling time is the next variable to look out for. But what else should we keep in mind about outcomes and treatments?

The data seems to be positive based on how long after RP, but the 9’s are worrisome.

Greatly appreciate any thoughts, perspective or good vibes.. Thanks.

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22 Replies
Justfor_ profile image
Justfor_

99 out of 100 would go for (blind) salvage RT. The 100th (yours truly) went off the beaten path. Month-by month documentation here:

healthunlocked.com/prostate...

Stevescut profile image
Stevescut in reply toJustfor_

👍🏻

dans_journey profile image
dans_journey

Hi Steve,

My case has been very similar to yours. RP in January 2011 and went 54 months without any detectable PSA. Then it came back at 0.05 and bounced around for about 18 months before starting a steady climb.

My PSA doubling time was being measured in years at that point, so my team and I felt comfortable monitoring without further treatment. It took nearly 6 years for my PSA to go from 0.05 in September 2015 to 0.2 in July 2021.

When it reached 0.2, I really wanted to see if we could find where the cancer was located before zapping it with radiation. I paid out-of-pocket for a PSMA PET scan at UCLA on 30 November 2021 when my PSA was 0.22. It didn't show anything, which was both good and bad. Good that we knew the cancer wasn't running rampant; bad that it couldn't guide the radiation oncologist.

In early 2022, my rate of PSA increases accelerated and, by April 2022 it jumped to 0.36.

At that point we moved forward with a six-month dose of Eligard ahead of 7 weeks of salvage radiation therapy to the prostate bed only. The ADT was supposed to "soften up" the cancer to make the radiation more effective.

Three months after the radiation ended, my PSA in November 2022 was 0.05, but we attributed that mainly to the hormone therapy. In March 2023, it was 0.13 and in May 2023 it was 0.11, giving us hope that the radiation was kicking in.

But on 31 October 2023, my PSA nearly doubled to 0.21 and by the first week of December, it was 0.33, giving signs that the salvage radiation wasn't effective.

In January 2024, my PSA was 0.37—slightly above where we started SRT—and I had a second PSMA PET scan that showed "no evidence of recurrent prostate cancer or metastases."

I met with a medical oncologist for the first time last week, and we're going to retest my PSA on 1 May 2024 and let the results guide us. The MO was inclined to do another PSMA PET scan in six months to see if we could find the location of the cancer before initiating hormone therapy. (There may be a possibility of spot radiation if there are only one or two isolated lesions.)

Maybe I was foolish to wait the six years as my PSA steadily increased; maybe not. I just know that those six years I had a high quality of life that allowed me to do plenty of things without the side effects of salvage radiation. (Speaking of SRT side effects, they have been minimal and less than I expected they would be. My stress incontinence has increased slightly and my ED has worsened slightly.)

I believe that more and more are suggesting on holding off on treatment until one of today's modern scans can detect where it is, so you can go after it with a much more targeted treatment plan. That seems counterintuitive to many who want to jump on the cancer as quickly as possible. It all comes down to our own personal risk level.

I've been blogging about all of this since my initial diagnosis, and you can read my experiences in unfiltered detail there. (Link in my bio.)

Wishing you all the best as you go forward.

Dan

Stevescut profile image
Stevescut in reply todans_journey

Really appreciate the reply and information!

Tall_Allen profile image
Tall_Allen

There are situations in which immediate (adjuvant) radiation gives better results than waiting for PSA to rise.

• positive lymph nodes, or

•Gleason score = 8-10, and

• Stage T3 or T4

Also, a high Decipher score adds to the risk.

prostatecancer.news/2021/10...

If this describes your situation, you should have immediate salvage radiation.

Stevescut profile image
Stevescut in reply toTall_Allen

Appreciate it

NanoMRI profile image
NanoMRI

Had my RP at 58 YO, G 4+3. Post-surgical nadir was 0.050; we accepted cancer remained. I rejected the 0.2 BCR (IMO deadly) guideline and also outside of common guidelines, I do not think in terms of doubling time. I rely on <0.010 as best indicator and values above 0.030 concerning. Over next nine months my usPSA rose to 0.11, so I went for salvage RT to prostate bed, shooting blind; nadir 0.075 (we got some but it seemed missed more). When my usPSA was back up to 0.13, after imaging, I went for (uncommon in US) salvage extended pelvic lymph node dissection; nadir <0.010. That was six years ago – holding very low stable ,0.030 last two years, no ADT/chemo. All the best!

chefjlu profile image
chefjlu

A little more involved than just Gleason up to 9s. I had RP a little over 5 years ago - Stage 3aPN1, Gleason 9 (you always use the highest number noted - although 4+5 or 5+4 can alter treatment). Almost 3 years with no treatment, PSA undetectable - then a little blip in PSA. Pet Scan showed 1 small spot in pelvic area. Put on ADT, and then had Salvage Radiation a little less than 2 years ago. Everything great so far - no issues with Radiation Therapy and minimal side effects from ADT (mild hot flash once in a while, a bit of fatigue). Coming off the ADT in May - last Lupron shot in November 2023, Abiraterone/Predinisone stop on date of my choosing. Exercise - stay active - alter the diet - STAY POSITIVE. Attitude & Exercise/Activity are shown to be key components with treatment. (By the way, genetic testing showed no mutation or genetic issues - this with a grandmother passing of ovarian cancer, uncle and father both with PC). Get informed - ask questions - make decision with your team - keep them informed of any issues.

realtorjohn42 profile image
realtorjohn42

Hi Steve,

My case is also similar to yours as I was 63 y.o. when my BCR was almost 5 years post RP. Gleason 7 Stage T2C, N0, MX with a focal margin. (in my Bio)

Once I got the news, I asked the group: "Is radiation the way to go"? and got the best information anyone could ask for.

Almost 4 years ago, I chose to get the 6 month lupron shot and ImageGuided Rad. therapy (IGRT) of the prostate bed with the Lymph nodes included. I wasn't looking forward to it at the time but it was the right thing to do.

I have remained undetectable for these last 4 years and very happy with my choice. Yes some ED and a little more incontinence have occurred, but very happy with my treatment and the guidance I received from this wonderful group of survivors!

Wishing you the best outcome with your case, going forward!

Still_in_shock profile image
Still_in_shock in reply torealtorjohn42

No ADT since then? Great!!

realtorjohn42 profile image
realtorjohn42 in reply toStill_in_shock

No ADT since then!!! Yes,.... Great!!!

PSA 10.3

Biopsy: July 2022

4 of 12 cores cancerous. 1 close to duct..

Gleason score 7.

Bone scan: August 2022

No metastatic spread.

RP surgery: October 22.

Single port DaVinci method. 30 day PSA <0.1

3 months thereafter PSA 0.13. Three months thereafter again 0.25.

Bone Scan: August 2023.

No metastatic spread.

PSMA Pet scan: September 2023

Metastatic spread to lower lymph nodes.

Oncology diagnosis: September 2023

Prostate Cancer Ductal Variant Stage IV.

Gleason score 8.

Treatment plan: October 2023.

Triplet treatment.

Lupron, six Taxotere chemotherapy treatments, to follow up with continued Lupron and cancer pills.

Entered treatment with PSA 0.3.

One Lupron shot and two Taxotere treatments later, PSA< 0.1

Second Lupron shot and 4th Taxotere

Treatment complete, PSA < 0.1

Final Taxotere completion PSA< 0.1

That's three < 0.1 in a row...

Third Lupron shot done...waiting on cancer pills to come in... Next PSA test end of April.

I was told that my greatest chance for longevity was hitting hard up front...

That being medication and chemo.

Chemo once every three weeks for six treatments, was a walk in the park... Compared to the horror stories you hear... My most adverse effects were diarrhea and a few days that I called chemo dips, tiredness that did not resolve with rest.

Yes, my hair fell out... But it is coming back...a few more months of looking like a chia pet and I hope to be good to go...

Do not fear the chemo...chin up... and like Nike says: JUST DO IT!

Regards.

Ron

Daddysgirl83 profile image
Daddysgirl83 in reply to

How did you know that it was gleason 8 when PSA went 0.25? How did they found out it was pelvic spread ductal pca?

in reply toDaddysgirl83

My initial biopsy showed 4 core samples with one sample very close to a duct.The urologist indicated that core sample was deemed very aggressive. At that time my Gleason score was deemed a 7...

Post RP surgery my PSA went from < 0.1 to 0.25 in about 6 months. The urologist ordered a PSMA scan...

My pre PSMA scan PSA reached 0.29. My PSMA scan reflected spread to lower lymph nodes. I was referred to oncology for evaluation.

The oncologist read all of my blood work tests, biopsy results, 2 bone scan results, RP surgery results, and PSMA scan results and assigned me my new diagnosis...

Prostate Cancer Ductal Variant Stage IV.

Gleason score 8.

.

Daddysgirl83 profile image
Daddysgirl83 in reply to

Thats interesting! My dads PSA went also under 0,1 to 0,25 in six months after surgery. The pathalogy came back gleason 7 ( 3+4) and some very small 3+3 and a foci ( small) ductal carcinoma. They were not seem to worried about the ductal part at all. PSMA pet scan at 0,23 did not show anything but false positive spot in L3 they said. I am so confused. Now around 1 year its 0.3 and they might to another PSMA at 0.4.

I am afraid they are not approaching this quite they way the should here in Sweden. He might need hormones and medicines asap but they are in the wait and monitore approach 😞

in reply toDaddysgirl83

I wish I understood more... I have read that the survival rate outcomes for the ductal variant are not as promising.

Once the oncologist stated his diagnosis he gave me three options...

Life expectancy...

1. Lupron alone... 2 years

2. Lupron and Zytiga... 3 to 4 years..

3. Lupron, Taxotere, and Zytiga.. 6+ years.

Option 3, refered to as triplet therapy, right out of the gate, is a test of one's endurance yet offers the best results...

I firmly believe starting chemo ASAP is the best move... don't wait until the cancer is further along...

Please keep me updated...

Ron

Daddysgirl83 profile image
Daddysgirl83 in reply to

No matter what I say or push on they are waiting until it hits 0,40 to do a Psma pet scan again. I think if they see something they will act on that, accoriding to  Justfor_ and their calculator the doubling time is around 12-13 months even though 0,25 showed up within six months of the surgery. The pathalogy said a very little spot ( foci) indraductal and they dont really take it in count. We might meet another dr now in April for second opinion but they are not worried to act soon here I am afraid. Also Tall_Allen recommends us to wait for another PSMA scan, the last one scared us while being false positive.

in reply toDaddysgirl83

I think it wise to seek a second opinion...

The bottom line, he has prostate cancer.

He had his prostate removed. Essentially,

you should not have a "number."

When mine went from < 0.1 to 0.13 I was told that was still considered undetectable.

I was advised that 0.2 was cause for concern and the tripwire for a PSMA SCAN.

I hit 0.25... from a routine general practitioner PSA scan... Called the urologist... He tested me a week later.

I was at 2.9 He arranged the PSMA scan.

Scan revealed movement.

The oncologist saw me, did his own blood work and it came back 0.3.

Treatment begins ...

1 shot Lupron and two Taxotere treatments later, I was back to < 0.1 ..THANK GOD!

Essentially, cancer cells starved and "killed"

Perhaps not the whole army, but well on its way to weakening and depleting their advancement.

So far a total of three Lupron shots and 6 Taxotere treatments and three PSA tests later, I'm holding at < 0.1 🤞...

I stared on the Zytiga once daily, and 5mg of prednisone twice daily end of March.

My next oncology PSA test will be end of April...🤞.

The trick is to find an oncologist who is as worried as you are.... one with a sense of urgency...

Let's face it the cancer is there and it isn't going away on its own...

Let me know what you find out...

Ron

Daddysgirl83 profile image
Daddysgirl83 in reply to

Thank you so much for sharing your journey! Fingers crossed and prayers that your journey from here goes smooth and well 🙏🏼

I will keep you updated if/when we know more. I guess in a couple of months we sort of know which direction we should take. Hopefully.

fourputt profile image
fourputt

Had RP in 2012 Gleason 4+3=7 PSA 7 which lasted exactly 6 yrs. Had SRT at .22 in 2018 (no ADT) which last 6 more years and am now at .63 and about to probably have another Pylarify scan (first one at negative PSA .43- 8 months ago). At a GS9 I would suspect your next move will be SRT with ADT but with all the tools they have available I suspect you'll many more options than I did. I wish you the very best of luck on your journey.

Cackalacky_cyclist profile image
Cackalacky_cyclist

I, like many others here, decided to act “aggressively “ prior to the current 0.2 BCR guidelines and had prostate bed radiation at a PSA of 0.12. I am now going for whole pelvic radiation ( next month)after that failed as my PSA returned and climbed to 0.11. Had a PSMA scan and found an errant iliac node.

My advice is act early, act often - do what you can to catch the sucker before it escapes.

MrkP profile image
MrkP

I had salvage radiation when my PSA climbed up to .1 about 1.5 years after surgery. I was originally Gleason 9. Radiation included 6 months of ADT.

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