Active surveillance has ended after o... - Prostate Cancer N...

Prostate Cancer Network

4,901 members3,038 posts

Active surveillance has ended after one year. RP now recommended.

CAMPSOUPS profile image
41 Replies

My brother began active surveillance a year ago under a gleason 6 and now last week biopsy reveals gleason 7 and recommendation for RP by Urologist.

Im guessing this is favorable low risk and as such what are the pro's and con's surgery vs. radiation if anyone has comment much appreciated.

TRANSRECTAL BIOPSY LAST WEEK

A. Prostate right mid

B. Prostate right lateral

C. Prostate left mid

D. Prostate left lateral

A. Right mid benign prostatic tissue

B. Right lateral Adenocarcinoma, Gleason 3+4=7, grade group 2, tumor occupies one of three core biopsies, tumor comprises 5% of tissue biopsied

C. Left mid benign prostatic tissue

D. Left lateral Adenocarcinoma, Gleason 3+3=6, grade group 1, tumor occupies one of three core biopsies, tumor comprises 5% of the tissue biopsied

E.

MRI BIOPSY ONE YEAR AGO

A. Prostate right lateral

B. Prostate right mid

C. Prostate left lateral

D. Prostate left mid

E. Prostate ROI #1

F. Prostate ROI #2

A. Right lateral benign prostatic tissue

B. Right mid benign prostatic tissue

C. Left lateral Atypical small acinar proliferation

D. Left mid benign prostatic tissue

E. ROI#1 Adenocarcinoma Gleason 3 + 3=6 grade group 1, Tumor occupies 3 of 5 biopsies, Tumor comprises 10% of tissue biopsied

F. ROI#2 no tumor identified, fibromuscular tissue

Written by
CAMPSOUPS profile image
CAMPSOUPS
To view profiles and participate in discussions please or .
Read more about...
41 Replies
CAMPSOUPS profile image
CAMPSOUPS

I tried to post this in other than the advanced segment here but was unsuccessful.

Jamesjohn63 profile image
Jamesjohn63 in reply to CAMPSOUPS

youtube.com/watch?v=_AiZvd2...

CAMPSOUPS profile image
CAMPSOUPS in reply to Jamesjohn63

Hi James I dont know what that video is/was as I cant open it.

Seasid profile image
Seasid

What's the age of your brother?

If you go to RO he could order a PSMA PET scan to see where the cancer is and what is the SUV max value of the prostate.

If you have surgery it could result with inconvenience and you could bleed out worse case scenario.

I don't have enough knowledge and information to decide, it is not my life.

I just hat 5 cessions of MRI guided SBRT with the linear accelerator (MRI Linac) it is bloodless with surgical precision executed.

If I were above 70 I would definitely prefer radiation therapy. Not everyone is fit enough for surgery.

E2-Guy profile image
E2-Guy

My RP ended up in recurrence and also left me totally incontinent.

CAMPSOUPS profile image
CAMPSOUPS in reply to E2-Guy

I remember that and of course you have been looking for relief from incontinence for quite some time.

Do you think it was inexperience of surgeon?

E2-Guy profile image
E2-Guy in reply to CAMPSOUPS

My surgeon was highly recommended; however, he did it robotically when robots were quite new 18 years ago. I had it done on a Tuesday afternoon, released on Wednesday, and Friday I spent a couple of hours on my waverunner in San Diego Bay.

Tall_Allen profile image
Tall_Allen

Favorable intermediate risk

But that is such low amount of pattern 4 cancer (only 5% of a single core) that he can easily stay on active surveillance. I suggest he get a second opinion on his biopsy from Jonathan Epstein at Johns Hopkins:

pathology.jhu.edu/patient-c...

Epstein will also tell him what % of the 3+4 core is pattern 4.

After he gets the biopsy slides back from Epstein, he should also obtain a genomic test on them (Decipher or Prolaris). He should also have a germline test, like Color Genome Dx. I can see why you are concerned, given your own experience, but there is only really a very small relationship between close kin on phenotypes.

Please assure him that he has plenty of time to make an informed decision, a year or more.

Meanwhile, here are strategies that have been tried to extend time on AS:

prostatecancer.news/2022/06...

When he is ready to explore intervention, here are some questions to ask himself:

prostatecancer.news/2017/12...

He may find this useful in choosing a doctor:

prostatecancer.news/2017/12...

CAMPSOUPS profile image
CAMPSOUPS in reply to Tall_Allen

Thank you that's extremely helpful.

Interesting I was thinking RP vs. radiation and here AS is still viable.

PTvsPC profile image
PTvsPC in reply to Tall_Allen

I'm an example of mostly 3+3 with "some" recently discovered G4, but unclear how much. I had doctor Epstein give me a second opinion. Turns out my G4 was less than 5%. Dr Epstein said I could make a very strong case for staying on active surveillance as long as I get regular check ups including a yearly MRI or biopsy.

That was a year ago and my recent biopsy shows "stable".

Epstein said he would think very carefully about any traditional therapies like RP, etc, due to long term side effects.

Seasid profile image
Seasid

How old is your brother?

Yearofthecow profile image
Yearofthecow

Based on what you have posted it sounds like all options are open to you including AS. I would definitely talk to a RO and someone experienced with AS. I am surprised your urologist didn’t suggest that as an option

You might want to consider a comprehensive cancer center to get a second or third opinion

CAMPSOUPS profile image
CAMPSOUPS in reply to Yearofthecow

Thanks yes I was conflicted with the recommendation.

addicted2cycling profile image
addicted2cycling in reply to CAMPSOUPS

The TRUS Biopsy whether guided or not is not capable of providing the integrity of a transperineal biopsy since the anterior can not be biopsied.

frontiersin.org/articles/10...

Seasid profile image
Seasid in reply to Yearofthecow

By ordering a 68Ga PSMA PET scan your RO will exactly see where your cancer is in your prostate and how agressive is from the SUV max value without a need to biopsy a prostate:

ncbi.nlm.nih.gov/pmc/articl...

By biopsying your prostate they only see the agressivnes of the cancer from the biopsied location, but with the PSMA PET scan they see every location. Therefore a PSMA PET scan gives a much better picture about the agressivnes and the spread of the cancer in your prostate.

I would feel much better to continue an AS after a PSMA PET scan (of my prostate) than just to relying on a few biopsied spots in my prostate.

ncbi.nlm.nih.gov/pmc/articl...

maley2711 profile image
maley2711

Additional studies should give us a much better appreciation for the usefullness, or not, of a PSMA PET for initial diagnosis and treatment decisions.

I do have a basic question re assigning a Gleason grade ?? Say someone, eg yours truly, had an initial biopsy that found nothing in 6 targetted biopsies to an MRI PIRADS 5 area, and of 12 additional systematic biopsies, found < 10 % of 3+3 in one core, and one core with < 10% 4+5. The PSA was 7.5, and a few months later, A PSMA PET found SUVMax of 8.2 in the prostate....no metastasis. Is this really a very high risk PCa???? Say RP has been done on a case like this.....on what basis is the patient downgraded, as I notice that three Grade Group 5 men were downgraded post-RP in this study. Is not a person's Gleason Grade based on the biopsy core with the riskiest looking core sample.....it certainly was for my case......16 benign cores, one core < 10% 3+3, and one core < 10% 4+5......so my final biopsy score was Gleason 4+5 = Grade Group 5? How could that be downgraded based on post-RP pathology????

Thanks in advance for enlightenment re this question!

Seasid profile image
Seasid in reply to maley2711

Very good questions.

I am not a doctor.

But I would be very scared with a Gleason score of 9 myself.

Did you have a PSMA PET scan at a competent place?

I believe the Gleason score of 9 is more important than the SUV max value of 8.2. (i personally would interpret that way for myself, but I don't really know.)

Take it seriously.

maley2711 profile image
maley2711 in reply to Seasid

Of course I fear cancer!!! Also fear all the potential immediate loss of QOL from the ADT and radiation......yes, I'm assuming the Gleason score more important than the PSMA SUV.....but we don't really know as studies of that will be a long time coming, sadly.

Defintely rather have a lower SUV for Sure!! I'm already osteopenic T -1.9, so very discouraged per doing ADT......Mom had 2 broken hips....horrible. Neither Doc ordered DEXA scan......i had to ask for it...same with PSMA PET scan !!! Same with sedation for my biopsy...... not that impressed with Docs I've encountered so far...I guess they're too busy?? Maybe I expect too much???

Seasid profile image
Seasid in reply to maley2711

Did you see this study about PSMA PET scan determining the agressivnes of the prostate cancer in your prostate gland?

Can SUVmax values of Ga-68-PSMA PET/CT scan predict the clinically significant prostate cancer?:

ncbi.nlm.nih.gov/pmc/articl...

maley2711 profile image
maley2711 in reply to Seasid

Thank you ! Yes I had seen that..........

" There was a moderate correlation between the SUVmax values and grade groups (Pearson’s ρ=0.50) (P<0.001) obtained from biopsy reports while a strong correlation observed between SUVmax values and grade groups obtained from the final pathology reports (Pearson’s ρ=0.66) (P<0.001) (Fig. ​(Fig.2).2). The mean SUVmax value for grade group 3 tumors was 13.3±8.5 and it was significantly higher than grade group 2 tumors, which was 7.4±4.6 (P<0.001). The mean SUVmax values of high-risk patients according to the final pathology reports were significantly higher than those of low-risk patients, which were 18.9±12.1 and 7.16±6.2, respectively "

I don't think there is anything from the rsults that would let me rest easy about my high risk diagnosis......a small number of high risk patients, a wide range of SUVmax values for those men, and certainly no long-term cure results compared to prostate SUVmax results...which would be the really important study, but many years before we'll know it seems. I would definitely rather be on the low end of SUVmax, which I am for the few high risk men studied here. A top surgeon at MSKCC suggested I might havea genomic test for my one core of < 10% 4+5.....but the result of that test wouldnot be definitive as to need for treatment..he suggested perhaps a lower genomic score might make me more comfortable with a shorter duration of ADT as part of radiation treatment. I don't know......so much is really hope and a prayer !!

A lot of men in these PCa forums credit this or that for good long-term results both cure-wise and regarding side effects. Maybe, but I'm not convinced that luck isn't just as important?

Seasid profile image
Seasid in reply to maley2711

If you have to use ADT can you use Degarelix? I am using it for 4.5 years and just now I turned osteoporotic.

I believe that if you use Firmagon injections for 2 years after stopping it your testosterone levels may return to normal levels quicker than after stopping lupron.

I am not a doctor therefore double check this information, but I believe somebody said this on this forum.

I wish you luck and If I were you I would be for 2 years on Firmagon injections waiting until my prostate cancer dies out after radiation.

I just finished SBRT of my prostate with the MRI Linac.

5 sessions 38Gy to the prostate.

My PSA dropped from 1.4 to 1.2 after 4 sessions.

My prostate SUV max value was 14 on the 68Ga PSMA PET scan.

I don't have any visible mets on the PSMA PET scan nor on the FDG PET scan and I made a decision to kill the CRPC with radiation in my prostate so I can continue with Degarelix injections.

My intention is to do the Guardant 360 CDX liquid biopsy and to follow the progression of my cancer on the molecular level.

The liquid biopsy will probably not give any useful information but it will be still interesting to see the results.

It is difficult to rely on the PSA alone, or even on the PSMA PET scan results to make a decision about the cancer treatment. Sometimes the spot on someone's lung needs time to turn PSMA avid lesion even on the most sensitive PET scans etc.

Therefore the liquid biopsy could be a security layer to make a treatment desission.

I can do a new PSMA PET scan in about a year and see if there are any visible mets?

If the PSMA PET scan visible mets will be safe to SBRT with the MRI Linac than I will do it. My thinking is that that way I may be able to get rid of the CRPC.

Of course it is only a plan and as you just said we need to be lucky also.

Therefore who knows what the future will bring.

maley2711 profile image
maley2711 in reply to Seasid

Thanks ! I just typed a longer response, but something is happening repeatedlyhere at HU the last few days..... suddenly I find my reply vanished and some message about my post search was unsuccessful...more than frustrating !!! Mayb e I'll attempt a more thorough reply later....lost patience right now!!

Seasid profile image
Seasid in reply to maley2711

You can always reply just take it easy.

maley2711 profile image
maley2711 in reply to Seasid

Ok.....my cursor must be moving somewhere else as I type and look at keyboard.

In your bio, you mention avoiding local treatment.......do you advocate that for all men, or just men who have been found by scan to be metastatic? were you metastatic at initial diagnosis...your treatments would seem to indicate so?

Seasid profile image
Seasid in reply to maley2711

Exactly.

I am polymetastatic and for me local therapies are not recommended as it will not extend my life.

However I don't want a cancer in my rectum or bladder.

And I am more than happy to SBRT any CRPC from my prostate.

Yes, it is not recommended but I am doing it for a peace of mind.

maley2711 profile image
maley2711 in reply to Seasid

Makes some sense to me... did Docs agree to your fear? Insurance coverage?

I had not considered that logical fear......any stats on how often that happens...migrating to rectum or bladder?

Seasid profile image
Seasid in reply to maley2711

I started to have some problems with urination and asked for referral to the RO. It was done according to the agreement from 4 years ago between my MO and RO that I will contact RO ones my PSA starts to rise.

RO ordered PSMA PET scan and my only visible cancer was in my prostate with SUV max value of 14.

I didn't have any visible mets on the PSMA PET scan. I also scanned myself with FDG PET scan in order to see if I have any PSMA negative visible mets.

After the realization that I don't have any PSMA positive nor PSMA negative visible mets I made a decision that I will SBRT my prostate.

TA agreed that in my situation irradiation of my prostate will actually excited my life.

I can't give you tips about the insurance in your country. You should make an effort yourself.

maley2711 profile image
maley2711 in reply to Seasid

forgot that you're "down under " so, you weren't initialy diagnosed as metastatic...you say PSMA PET shows nothing now? cept prostate itself. Or, you had visible mets previously, but they have disappeared on latest scans?

Seasid profile image
Seasid in reply to maley2711

At the start I had 4x 68ga PSMA PET scans. I started Firmagon injections and after 2 months I started early Docetaxel chemotherapy according to the recommendation of my RO and a board of urologists at my local hospital in Darlingurst.

I had of course a CT scan of my spine and a nuclear medicine bone scan first in order to get the diagnosis.

I had about 15 visible mets.

Now 4.5 years on Firmagon injections I don't have any visible mets but I had a CRPC in my prostate. In order to continue only with ADT I decided to irradiate my prostate in order to get rid of the CRPC in my prostate.

I am now osteoporotic. That is my problem and I should see the endocrinologist soon.

maley2711 profile image
maley2711 in reply to Seasid

all makes sense.....and good results...knocked down those spots!!! But, now osteoporosis ..probably caused by ADT ?? Did you have a DEXA bone density scan anytime prior to treatment, or at an intermediate time during the 4 years? Results? I guess if you had a baseline number you'd be more certain that was caused by ADT.

I'm already osteopenic with a t score of -1.9....over next 10 years, 13% risk of major fracture, and 7% risk hip fracture.....I don't know how much of that risk is due to my Mom having had hip fractures on both sides....the last one she died, but we will never know conclusively that the fracture caused her death.....an accident, and shhe wasn't discovered for 2-3 days after it happened......81 years in her own garage.....sigh!!!!

Beautiful Thanksgiving day here !! Do you have anything similar there?

Dale

Seasid profile image
Seasid in reply to maley2711

I had dexa 2 years ago and just now and I am osteoporotic therefore I have to go to the endocrinologist.

Seasid profile image
Seasid in reply to maley2711

I have no idea.

I am Hungarian what people call East European. all my grandparents were born in Austria Hungary. I am culturally out of touch here.

Actually i am totally different than anyone else.

My sister and I concluded that the world changed and we remaining the same. Our children are also totally different than us.

maley2711 profile image
maley2711 in reply to Seasid

Well, hopefully the younger generations will do better than the older have ???

I see the possibility...if they can overcome the negatives of the internet and only take dvantage of the positives...but human history suggests that may be difficult? Conspiracy theories, denial of science, not understanding what science even is.

I admire anyone who has survived as an immigrant...my wife is from the Philippines, and very different culture there of course.... in a number of ways, beter there, poor though they may be.

Seasid profile image
Seasid in reply to maley2711

I agree with you.

maley2711 profile image
maley2711 in reply to Seasid

Bless you and yours of all cultures, and PEACEand Harmony to the world, especially to those whose countries are experiencing war and dire poverty......and the rule of dictators!

Seasid profile image
Seasid in reply to maley2711

Where are you from? My home town was Zombor (Sombor now)

maley2711 profile image
maley2711 in reply to Seasid

Zombor ...no idea, even what country? Portland, Oregon USA....for last half of life

Seasid profile image
Seasid in reply to maley2711

You can search the internet. Easy

westof profile image
westof

Hmm... 4 years ago my dx was Gleason 9. However, miraculously I was stage 3.

Went to MSK and had HDR Brachy, 25 days if IMRT and 2.5 years of hormone therapy.

In the summer of 2021 they scanned everything and not only was there no evidence of any metastasis, all of my organs were deemed "unremarkable" (good!).

Given the life that I've lead, that in itself is remarkable!! 🤔

Next month I turn 74 and feel great. NEVER give up hope!

Best

Well RP surgery is the most invasive and incurs the highest risk of side effects. I would suggest seeking a different treatment. Too many people rush into that at their urologist's suggestion. That's what urologists do -- RP surgery! Dr Scholz calls this phenomenon "Invasion of the Prostate Snatchers". He wrote a book on it, with that title.

Airborn1 profile image
Airborn1

Recommend a 2nd opinion, and other procedures, such as focal ablation, dependent on lesion dimensions and location. But worth looking into, anything radical at this point is too Radical. JMHO

You may also like...

newly diagnosed Gleason 7 3+4

Prostate, left mid; needle biopsy: - Benign prostatic tissue. C) Prostate, left...

Uro and Surgeon Recommending Focal Cryoablation

E. Prostate, left mid, needle core biopsy: - Prostatic adenocarcinoma, conventional/acinar type,

Prostate cancer what to do.

OF TWO OF THREE CORES F) PROSTATE, LEFT BASE X3, BIOPSY PROSTATIC ADENOCARCINOMA, GLEASON SCORE...

Gleason score change from 3+4 to 3+3 with perineural invasion noted under Active Surveillance

A: Benign prostatic tissue. B. RPZ PL: PROSTATIC ADENOCARCINOMA, Gleason score 3+3=6 (Grade Group 1)

Biopsy Question: Suspicious for focal intraductal carcinoma

Cancer Grading: Primary Gleason grade: 4 Secondary Gleason grade: 3 Total Gleason score: 7...