Not Good News after prostate biospy when MRI didn't look too bad

You need a second or third opinion from top 5 or 10 center of excellence. I struggled with quality of life post surgery and how many35 or 40 day treatments to sign up for . These are hard choices. My surgery was incomplete. Positive margins etc. . It does seem that the radiation side effects are less when the people posting here go to mriguided proton therapy. The sales pitches I get claim photon is just as good but I personally know a dozen or more whose lives are pure hell with intestinal burns and permanent bowel issues . My hopes currently center on detecting a treatable hot spot and zapping it with 2 or 5 fraction proton therapy. Do a lot of research. People on here have experiences and connections that are invaluable. Be well and God bless you.

@billfarm It's a trade-off: more-precise radiation means fewer side-effects; less-precise radiation means a better chance of catching any cancer cells that might have already spread locally (but haven't yet formed tumors big enough to detect with imaging).

I have radiation cystitis and proctitis long-term from photon RT in 2022. I definitely wouldn't describe it as "hell," just a mild discomfort (except for a bout of hematuria and urinary incontinence in summer 2023, which I overcame).

On the bright side, those side-effects are reminders that the radiation spread around my prostate and didn't just stay in it, which meant that if there were any stray cancer cells hanging around in the prostate bed, the bottom of the bladder, or my rectum, they got zapped by the radiation as well, and hopefully there won't be anything developing there in the future. 🤷

@diverjer
You are at a point all of us have been. First diagnosed and hit with all this information and trying to understand. Just know that all of us were faced with this. What you are feeling is normal and what we all felt.

I want to pass on to you my personal experience with my journey with prostate cancer (PC). We are not medical professionals on MCC and do not have your medical and mental health history. We can give your our experience with PC and why but you need to make your own decisions on what is best for you.

One of your questions you asked is why did they take biopsies of areas not identified in MRI as suspicions. Same question I had. A urologist trained and experienced in prostate cancer (PC) will take many many biopsies to ensure they get a look at as many areas of prostate they can. Many PC is at cellular level, not a lesion, or tumor. So urologist tries to get an overall biopsy report on your prostate not just a specific area.

I had 30 rounds of radiation and I asked my R/O did they just radiate those areas identified in MRI and biopsies? Answer no. They radiated my entire prostate and margins. Why? Because biopsies can miss areas that have PC as you can't do a biopsy on every cell of prostate. They want to make sure they don't miss some PC so they radiate all if prostate including margins. Now I say this because that is my journey. I have read post were some had radiation or treatment to a specific identified area so I pass on my experience not speak for others.

I did not have surgery. From what I have read about it there are many types of surgery that can be done and specific ones nerve sparing. But cannot give you much more than that as no personal experience with surgery.

Radiation. Many different types of radiation treatments that would take pages to list. I had proton radiation pencil beam. Proton radiation enters body at low dose, releases it's full power at specific determined location and stops. The beam is highly controlled to help prevent radiation damage to healthy tissues and organs.

Photon radiation, a different type of radiation enters body full force, radiates what ever it hits and continues out and through body. Many new ways of using photon have emerged to help reduce secondary damage but the radiation beam will not stop until it continues through and out of body.

Thus will radiation damage other organs and tissues. Yes. But some types of radiation will greatly reduce this to help lesson damage to healthy tissues and organs. Things like SpaceOar to help move colon away from prostate and drinking water prior to your radiation will help move bladder away.

Everyone is different in how their bodies react to radiation and everyone's bodies are different. I had very mild side affects that were all explained to me prior to treatments. I know you are being hit will a ton of information but be careful, slow down, explore all treatments and get pros and cons for all.

Gleason scores you need to be concerned with are the 4+3=7. You are 78. I was 76 when I got radiation treatments. When you are young with a long life span ahead of you surgery sometimes seems to some better. But surgery is surgery and comes with additional problems and side affects.

I always suggest getting second opinions and additional tests like Decipher. Decipher is a genetic level tests on the biopsies you have had done already and greatly enhances a more accurate risk level. I was originally at risk level intermediate based of Gleason and after Decipher lowered to low. Why important? Commonly with a Gleason at intermediate or high urologist and R/Os will recommend hormone treatments. That is a treatment that can create some troublesome side affects for some but not all. So I did not have hormone treatments.

PSMA. A test to see if your PC has spread outside of your prostate. Mine was negative.

If your doctor have not talked to you yet consider getting a second opinion even after they do. I did and confirmed my diagnosis and treatment plan was same for both urologist and R/Os. I am not sure where you are being treated. Is it a large, experienced medical center? If not consider having a second opinion and your treatments done at a center of what they refer to as Center of Excellence.

Good luck just know ton of information. But talk to your doctors and specialists about your diagnosis and treatment options for all not just one. Most of us will suggest second opinions and make sure the medical doctors and medical facility you are using are experience in PC, with lates medical equipment and test, as well as treatment options.

Sometimes the worrying is worse than the prostate cancer itself. Sit back, take a breath, and review the areas in your test reports that matter.

Try to avoid making assumptions if you’re not sure what the results mean. Otherwise, your mind will take you to dark places…..

During a biopsy, they always do random samples around the lesions identified in the MRI, because there is a chance of unseen lesions being within a certain distance away.

With your 15 samples:
> Gleason 7(3+4): [Cores A, C, E, F, M]
> Gleason 7(4+3): [Cores B, D, H, J, L]
—> With Cribriform pattern
> Benign: [Cores G, I, K]

They’ll treat you per the highest Gleason score.

What that Cribriform pattern means is that it’s a little more advanced than your run-of-the-mill 7(4+3), and that they’ll treat it one step higher (like a Gleason 8). That happened with my brother and me - I had a run-of-the-mill 7(4+3) so, I had 28 sessions of radiation + 6 months of ADT. He also had a 7(4+3), but like you he had additional risk factors so, he had 28 sessions of radiation + 2 years of ADT.

Again, don’t let there numbers take you to dark places. With today’s medicine, there are solutions to each of them.

A Gleason score is a number assigned to a lesion based on the appearance of the cells under a microscope. In your case you have a Grade Group 3 (Gleason 7(4+3); see attached graphic), but with Cribriform pattern - holes that look like Swiss cheese, which is a higher risk factor warranting slightly more aggressive treatment.

For me, getting my results prior to talking with them was great because that gave me time to investigate, become knowledgeable, and come up with questions so that I wouldn’t go to the next appointment cold and be blindsided. You should use this delay as an opportunity to get more informed.

Statistically, just getting it “cut out” provides no advantage over radiation. For localized prostate cancer, success rates are statistically equivalent; you just have a different set of quality-of-life side-effects to deal with.

Yes, a prostatectomy does take 100% of the prostate out. (When I had these basic questions, my urologist brought out an anatomically-correct plastic model of a male pelvis, and showed me what goes on during a prostatectomy. You should ask your urologist to do this; or search YouTube videos for prostatectomies.)

Most of your questions are very basic questions. You need to take the time to research all the questions you asked about surgery (all the different types), radiation (all the different types), and hormone therapy (all the different types you didn’t ask about), and all the plusses and minuses of each, because eventually it will be up to you to make the decision of how to proceed with which treatment (not the doctors).

Your age matters, too. At 78y your priorities are probably different than someone at 48y.

At 65y, I had 28 sessions of proton radiation + 6 months of hormone therapy + SpaceOAR Vue. At 79y, my brother had 28 sessions of IMRT + 2 years of hormone therapy + fiducial markers. We’re both doing fine with little quality-of-life impact. For me, the decision-making and choice wasn’t difficult; it just took time. And I helped guide my brother; his decision came more quickly with my assistance.

As for any type of treatment, they always have to do it right. With today’s modern radiation, they simply have to avoid over-shooting the prostate; that’s it. If they overshoot the prostate, there will be side-effects; that’s why I chose proton.

Again, learn all that you can; don’t let your emotions guide your decision-making. Choose well.
======================

@brianjarvis
Thanks for the information, yes it is really stressful and still haven't heard from anyone. Now since I look at report better I do see 2 that were cribriform, I was too focused on all those lines and gleason score as well as grade groups.
Several years ago on annual wellness I went from normal PSA of 2 (which I had forever) to a PSA of 3.6 in one year. My PCP for wellness said no big deal it still under 4. Think I should have listen to my gut back then think that was too big of a jump for a year.
This year I had a jump to 5.26 and a month later back to 4.16, but still I bypassed PCP and went to urologist.

Here are three screen shots from a UCSF discussion about the risk of large cribriform.

As others have mentioned when you have a prostatectomy, they removed the prostate completely. The urethra goes through the prostate, what they do is sew it back together after the prostate is removed and put a catheter in to allow it to heal. It does reduce the length of the urethra since the part that went through the prostate has been removed. That can actually reduce the length of the penis.

You want the nerves spared if possible. Those nerves allow you to get an erection, Without them, it is much harder, and may only be possible using injections or an implant. Sometimes they can only spare some of the nerves, but that still can help you get an erection on your own.

@diverjer PSA under “4” is generally a good rule to follow, and will have more good outcomes than bad. But, as for any general rule, there are sometimes exceptions.

Use this delay as an opportunity to gain more knowledge.

This evening at 7:00PM (ET) there’s a weekly prostate cancer support group meeting at: http://tinyurl.com/pc-warriors

There’s a wealth of knowledge and experience there. Join in, ask questions if you want to, or just listen to others’ stories. I think you’ll learn a lot.

If you are getting poke & hope biopsies those are about as accurate as a bent arrow even though the prostate is mapped. The only true way to know is a MRI infused with a URONAV biopsy. One urologist I seen at the time discovered cancer (3+3) PSA 11. Then I seen another urologist and his biopsy was clean. Then 8 months later had a URONAV - bingo. Small tumor next to colon wall (very dangerous). End result - RP.

@jeffmarc In your experience, does large cribriform typically coincide with a high Decipher score? And if there is not such a dependable correlation, should the existence of large cribriform always be viewed as if it were a high Decipher core?

@edutron
I believe that is what I had that started this whole thing off. First thing after that jump in PSA they did a MRI with and without contrast and found one Lesion PI-RADS 5. The MRI showed nothing has spread (will paste it below) and everything else looked good- except the Lesion. Then they did what they called a Fusion Biopsy which was guided by the MRI to the Lesion. Took 3 samples from Lesion and they were all 3+4=7 and grade group 2. They are the last ones on results above. Then they did 6 more snips on each side and found worse stuff than what the MRI Lesion.

MRI results prior to Biopsy:
Procedure: MRI PROSTATE W AND W/O - MRPROST
Results
EXAM: MRI prostate with and without contrast
HISTORY: Elevated PSA. Elevated PSA (States most recent 4.16, but jumped from 3.24 to 5.3 in a year). Hx BPH. Aquaablation
2024, Urolift 2019. Has not had prostate bx ***Clariscan 20mL@2mL/sec*** -KGB
COMPARISON: None.
TECHNIQUE: Multiplanar, multisequence imaging of the pelvis in accordance with PI-RADS recommendations before and after
the intravenous administration of contrast. Large field-of-view axial T1 images were obtained through the aortic bifurcation. 3D
post-processing was performed using DynaCAD.
CONTRAST: 20 cc Clariscan IV was administered without complication
FINDINGS:
Prostate measurement: 5.7 x 5.0 x 4.9 cm Prostate volume: 68.75 cc PSA: 4.16 ng/mL PSA density: 0.06 ng/mL/cc
Peripheral zone: See below.
Transition zone: No index lesion. Stromal and glandular BPH nodules.
Lesions (PI-RADS 3 or higher):
Lesion # 1: Location: Left posterior peripheral zone extending from the base to the apex Size: 2.4 x 1.3 x 2.6 cm (5.83 cc). T2: T2
hypointense DWI: Marked restricted diffusion DCE: Focal early enhancement, positive Prostate margin: Abuts the capsule without
definite invasion Overall PI-RADS Score: 5/5
Prostatic capsule: Intact.
Neurovascular bundles: Not involved.
Seminal vesicles: Not involved.
Lymph nodes: No lymphadenopathy.
Bones: No acute osseous abnormality.
Other findings: Small fat-containing right inguinal hernia.
IMPRESSION:
1. The prostate gland measures 5.7 x 5.0 x 4.9 cm with volume of 68.75 cc. PSA density is 0.06 NG/mL/CC. 2. Lesion # 1: PIRADS
5 lesion in the left posterior peripheral zone extending from the base to the apex measures 5.83 cc. No frank extracapsular
extension. 3. No pelvic lymphadenopathy.
PI-RADS Category 5: Very high (clinically significant prostate cancer is highly likely to be present).