Newly diagnosed - Gleason 4+3

[ocman]

PSA CHRONOLOGY:

7-22-16 - 1.2

8-10-18 - 3.6

4-23-19 - 5.3

6-27-19 - 3.5

7-25-19 - 4.8

8-06-19 - 4.2

BIOPSY RESULTS:

Ok, I got the results from my first MRI Targeted Biopsy by Dr. Leonard Marks at UCLA and they did find Cancer with a Gleason score of 4+3=7. The prostate is 31cc.

6 of the 15 cores were positive.

4 cores = 3+3

The 4 cores were located:

1 was systematic biopsy in the left lateral mid

1 was systematic biopsy in the left base

1 was systematic biopsy in the right lateral apex

1 was targeted biopsy in the Target Right posterolateral peripheral midgland

2 cores = 4+3

The 2 cores were located:

1 was systematic biopsy in the lower lateral apex

1 was targeted biopsy in the Target Right posterolateral peripheral midgland

CONSULTATIONS:

I saw Dr. Robert E. Reiter, Urologic Oncologist and he suggested surgery using the robotic prostatectomy procedure.

uclahealth.org/robert-reiter

He also said the following regarding side effects:

1) 85% change no Erectile Dysfunction, he said there were no red flags and he thought he could do the surgery without having to go into the nerve bundles

2) 3 months >50% have no leakage regarding incontinence

3) 1 year 90-95% have minor leakage

4) for the last 1.5 years he’s been grafting a placenta because of the growth factors onto the nerve bundles to help them recover and has seen a 50% rise in recovery

5) he’s done approx. 2000 robotic prostatectomy’s, 400 with a gleason score of 4+3=7 with about a 20% recurrence rate.

I saw Dr. Albert J. Chang, the Radiation Oncologist and he suggested either SBRT radiation or High Dose Radiation (HDR) Brachytherapy. That’s where they insert about 16-17 (2mm wide) hollow tubes into your prostate and apply the radioactive material to the tumor directly or within 1mm from the tumor. That’s done with ultrasound guidance.

uclahealth.org/Albert-Chang

He also said the following regarding side effects:

1) cure rate @ 10 years is 90% (UCLA data)

2) no incontinence

3) no erectile dysfunction (although there is a very slight chance)

4) feel need to urinate more often

5) urination might burn for 3-4 days

6) 2 months I should be where I’m at now

7) 2 treatments 1 week apart

I had my biopsy slides sent to John Hopkins Pathology Department for a second opinion today. They’re to be read by the expert pathologist Jonathan Epstein.

urology.jhu.edu/jonathaneps...

I'm leaning towards HDR Brachytherapy, but would like to know if anyone can recomment the top 3 urologic surgeons and radiation oncologists for HDR Brachytherapy in the US.

[Tall_Allen]

Suggest you see Chris King for SBRT at UCLA too.

Albert Chang certainly is one of the top for HDR brachy. Reiter is one of the tops for RP.

[judg69]

I have a couple comments . My Gleason was also a 7 (4+3) and cancer was in 9 of 12 core samples and a 4+3 in 7 of the 9 cores. Run, don't walk from your surgery Oncologist. Listen to Tall_Allen and the other knowledgeable folks here and get one or two alternate treatment protocols. Sounds like you are on the right track with meeting with the radiation oncologist and sending slides to Johns Hopkins for review. Everyone is different, but in my case last year I ended up having six months Firmagon treatment and twenty eight days fractionated high dose IMRT radiation. I finished the Firmagon seven months ago and all seems ok for now with PSA insignificant. Best Wishes for you, judg sixty nine

[ocman in reply to judg69]

Glad to hear that your PSA is insignificant! I'd never heard of Firmagon until now...

[Jt2ceo]

Had brachi, radiation. Similiar #. Also took lymph nodes as precaution. Now, limp dick, leaky pee,tired a lot. But cancer free 4 years. Happy to be alive. They also found a sister or brother in my lymph tube . I was an only child. Only thing that caused issues was hormone treatment. Immediate 40 lb weight gain. Stopped and lost in two weeks. Rode bike 100 miles for my birthday in middle of radiation treatment. Great Kaiser docs and staff in South San Francisco and surgeons in San Jose. Lived at beach for month and a half in Half Moon Bay during radiation. Just keep going. Your numbers look ok and just do everything before it migrates out of prostate. Good luck

[dentaltwin in reply to Jt2ceo]

Really--chimeric triplets?

[Adf2529]

Indibir Gil, at USC. RP.

[Jeff85705]

You should consider also seeing a clinical oncologist with (lots of) experience in PC. Everything you wrote shows you followed the correct steps including at least one second opinion (RO). You don't state your age, but I think an 85% chance of NO ED is generous at least. Typically there is a 50/50 chance of ED. Also the size of the flaccid penis after this surgery is often smaller (shorter) due to the removal of a portion of the urethra that is surrounded by the prostate. I don't know about the experimental "placenta" thing, and that may have a bearing on the 85% claim. Still, be assured that sex will be different post-op even with the best surgeon with thousands of surgeries. The survival rate of 80-90% is accurate. Incontinence is common for a couple months post-op, and some leakage may be permanent (it is with me). ED is commonly instantaneous after surgery regardless of "nerve-sparing" DaVinci process, the delicate, traumatized nerves taking time to heal). It can take up to a year or more to resume normal or close to normal erections--if at all.

I had a similar situation with a Gleason 3+4 after biopsy, age 67 at the time, 4+3 pathologically post-op. ED was absolute post-op (I had some ED pre-op). It improved after a year, but only with Viagra. I'm over 2 1/2 years out, PSA undetectable, penis appearance smaller except with partial "erection" which itself looks different.

The talk from your surgeon is all positive, but expect a life-change event right after you wake up. Still and all, I believe in cases like yours and mine that RALP (RARP) is the best way to have a 5-10 year cure rate.

I recommend a clinical oncologist because s/he may see the "big picture" and not be swayed by personal training (surgery vs. radiation).

Best of luck in your (undesired) "journey."

[ocman in reply to Jeff85705]

I'm 62.

I'm in Southern California with Anthem Blue Cross EPO, so I can go out of state for treatment. How do you find a top notch medical oncologist that specializes in PC?

Got my 2nd opinion results back today, I need to call Dr. Jonathan Epstein tomorrow for clarification because there was no Gleason Score on the results.

In the original results 6/15 cores were positive, 4 ea 3+3, 2 ea 4+3, you can see there's a slight difference in the 2nd opinion.

I hope this is enough information regarding the comparisons. Two different facilities two completely different types of reports.

Comparison

1st-------------2nd

3+3 25% --- 3+3 20%

4+3 40% --- 3+4 30% - 10% Gleason pattern 4

3+3 40% --- 3+3 40%

3+3 20% --- 3+3 10%

4+3 20% --- 4+3 20% - 70% Gleason pattern 4

3+3 20% --- 3+3 20%

Let me know what you think...

[ocman in reply to ocman]

Talked to the world renown expert pathologist today regarding my second opinion. He said the difference in the results were small and still warranted surgery or radiation. I asked him what he would do if it was him and he said surgery over radiation. He said the radiation leaves to much scar tissue and it makes it difficult to remove the prostate. I specifically asked about the HDR Brachytherapy with the spaceOAR gel protecting the rectum and he said it doesn't matter. He said, the sugeons at John Hopkins won't do surgery if you've had radiation.

I asked what the Gleason score would be since it wasn't on the second opinion and he said he doesn't believe in the Gleason score. I guess that's why he created the Epstein Grading system.

I'm still leaning towards radiation, but more concerned.

[j-o-h-n]

Greeting ocman, it may be a good idea to copy and past your biography under your user ID on your homepage for future reference (for you and for members).

Quoting you "cure rate @ 10 years" There is NO cure rate....

(ocman = original character man?)

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/05/2019 7:34 PM EST

[Jimhoy]

OC

Not going to say welcome to the family so, greetings!!

Now as a family member, I’ll offer my 2cents here as your wife’s stupid cousin Eddie!!!

Due to a very long story, I don’t recall my numbers but I know its Gleason 8. PSA was 11. Cancer was limited to the prostrate and no spread to other glands or bones!! If I were to do it all again, I would have had the RT and walk away for a while. I would not be held to the standard of care which uses a boiler-plate approach to treatment for EVERYONE. We’re all different!!!! Surgeons cut and Radiologist fry. They will both hump you for your business!! And don’t forget.....it’s a business and a very big, thriving one at that!!!! DON’t TAKE ME WRONG!!! One can speculate the true %’s but I’ll say 99% of the Dr are in it for you, but even at that, they are not there to wear out their old shoes!!! Look in the parking lot!!!!!

I digress.... ADT is one of the automatics!!! Why, because its SoC. What duration... well thats easy, the normal 24mo’s (some Dr’s accept a new standard of 18mo’s, some don’t). What product.... I think that’s a backroom thing!! What dosage / frequency.... well thats easy, what ever big Pharm says!!!

My first Dr set the regiment of 44 RT w/ 1mo of Bicalutamide and then the Eligard for 18mo’s. He moved and I was switched to #2 Dr who only seemed to be involved with my injections, not my care. When I started complaining about strange things happening to me, he sent me to Dr #3 (the “PCa Guru of RI”) who insisted on 24mo’s. Talk about Prid-Pro-Quo, I had to agree to continue Eligard in order for him to sign me out on RI temporary disability because of my side effects. Once my TDI was approved, I fired him and chased down my original Dr in a different network. Told him this story about Dr #2 where he responded that “he sure sells a lot of it (Eligard)”!!!

Where as most / some men have little more than the normal side effects (? (the ones they’ll tell you about)). I found that I am allergic to this treatment or the chemicals used to induce the castration. It wasn’t until the completion of my original sentence that I learned of options. Options that come with a fight with your Dr to allow you pursue them.

Anyway, sounds like you have time on your side to decide and you’re getting well informed to do so. Take that time and I hope you can avoid regrets caused by the system!

Jim

[ocman in reply to Jimhoy]

Thank you so much for sharing. I'm looking at all my options. At the moment I'm learning towards RT.

[Jimhoy in reply to ocman]

I can honestly say that I have a couple side effects from that. One, while walking with my grandson, I had an ass-plosion in the middle of nowhere with no warning. Turns out that the first 1/2 they shot the entire pelvic area for stray cells, the second 1/2 targets the prostrate. That can upset your bowel!! Guess at what point I was at while walking!!!!

Secondly is my gas is in the the form of bubbles?!!!! Stop laughing, I’m serious!!!! I completed my RT going on two years ago and I still have it going on!! Meeting with RO next week but he was not concerned too much about it last year!!! Offered me to set up appointment with a Proctologist but I was totally Dr’ed out then. Might consider it now because it is a housekeeping thing if you catch my drift!!

Good luck brother!!

Jc

[ocman in reply to Jimhoy]

I totally get it. The RO says the spaceOAR gel keeps the toxicity very low at the rectum. Did they use the spaceOAR gel on you?

[Jimhoy in reply to ocman]

They didn’t offer me shit!!!! Get it!!

But no, there was no discussion until after the fact! Added to the fact that I had not found or even thought of sites like this, I didn’t know to ask!!! There’s a lot wrong with that too!!!!

Jc

[jackcop in reply to Jimhoy]

lol, "my gas is in the the form of bubbles?!!!! " I'm sorry. Yes, that is a big housekeeping thing. lol I know I'll have stories to tell just as weird as ass bubbles if I begin treatment.

[ocman in reply to jackcop]

What treatment are you leaning towards?