Tall_Allen

You seem like the poster child for active surveillance.

It is common for subsequent biopsies to find more or less cancer - biopsies are only a sample. As long as there is no progression to higher grade, AS is the preferred option (by NCCN).

KocoPr in reply to Tall_Allen

I went on active waiting then active surveillance and urologist wanted to stay on active surveillance but i had my genetics done a fews years back by 23andme looking for other things. Long story short i had FGFR4 homozygous which predicted 7x chance of having aggressive PCa, and 5x of it becoming metatastic. I demanded my prostate be taken out and doctors were very surprised that my cancer had escaped the prostate in 2 lobes and perineural invasion. TA why wait for the cancer to grow more and escape? I had RP, but TA and this group are much more versed on other options like radiation ir cryo therapy.I wish I didn’t go on watchful waiting or active surveillance and just did cryo therapy or IBRT instead of RP. This just my experience and opinion.

Oh and you definitely came to the right group!

Oh again don’t forget to get Next Gen Sequencing BRAC 1/2 analysis with customNext Cancer on both your germline and your tumor biopsy. Demand this it could open up more targeted therapy.

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allie2020 in reply to KocoPr

I had a successful RP four years ago for my G3+4 prostate cancer. I had a huge prostate and troublesome urinary symptoms for many years. I had appointments with nine Doctors...Uro's, RO's and one MO. To answer your questions: I think you need a 2nd, 3rd and 4th opinion and not just from Urologists. They do surgery. I don't see any rapid growth in your pathology. You are 3+3 and only 3+3. I strongly encourage you to send your biopsy slides to Epstein at John Hopkins. I do not think you should have a prostatectomy in late July. Take your time, look into SBRT and other forms of radiation if you decide you need treatment. I'm so glad you found this site, I'm confident you will get many helpful replies.

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Tall_Allen in reply to KocoPr

Decipher genomic test of the biopsy cores is what is normally given if a pt is on the fence based on his biopsy. But the OP is not on the fence.

Certainly a good idea to get at least a germline genomic test. Color Genome Dx makes a good cheap one:

prostatecancer.news/2018/02...

But, as you can see, the odds of having inherited genomics that excludes one from active surveillance are quite low.

55% of the men with low risk PCa have stayed on AS for 20 years so far without incident. It seems that if a man can make it to 15 years without grade progression, it will probably never progress in his lifetime.

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MrG68

This is potentially a life altering operation.Yes you should get a second opinion

jimreilly

take your time, yes, get a second opinion --

Steve507

I second the second opinion route!

NYC_talker

yes get second opinion re: active surveillance but also see a radiation oncologist for sure.

addicted2cycling

somekindofwonderful WROTE --- " ... 1st biopsy ... 12 samples ...............

AND WROTE --- " ... 2nd biopsy ... 12 samples .......................

AND WROTE --- " ...... Chose RP and concerned about next chapter in my life

I’m in great shape at 6’4”, 205, hoping this will help me with quicker recovery.....................

AND WROTE --- " .... QUESTIONS:

1. SHOULD I GET A 2ND OPINION

2. DOES MY 2ND BIOPSY INDEED SHOW RAPID GROWTH

3. THOUGHTS OR COMMENTS??? "

AS MENTIONED obtain at least a 2nd opinion from Epstein. Posted RESULTS READ AS IF from the OLD SCHOOL and OUT DATED inferior random TRUSS biopsy method. IMO - not complete enough to make ANY TREATMENT DECISSION.

I would also request at least a 3TmpMRI and a guided biopsy for more complete results and for self satisfaction regarding possible mets. (which should be HIGHLY UNLIKELY) if PSA is high enough have a PSMA PYLARIFY PET Scan

PLEASE DON'T RUSH INTO SURGERY!!!!

GOOD LUCK and keep all here posted.

postman1961

Agree with all who say 2nd opinion, and 3rd, etc. And also agree not just urologist, but a trusted GP, radiological oncologist, etc. Urologists are surgeons and surgeons love to cut. I’ve talked to many many men who wish they had not done RP because of incontinence and impotence. Take your time, with 3 + 3 it’s a very high probability it’s not metastatic.

EJC61

I don’t think you need to rush. As others have said, have slides sent to Epstein. You also need a 3TmpMRI. Most larger NCCN hospital centers practice a multidisciplinary approach where you talk with a Uro and a RadOnc so you shouldn’t be pushed by any discipline. Btw, you’re still a GS 6 and no core is >50%. I definitely would hold off on July until you get more data. Also, what is PSA running at?

EdinBmore

Yes, to second (and third) opinions from uro, RO, and medical oncologist. There's no harm being done and it's important to understand one's options, likely outcomes, pros/cons, etc. Cuz once you have treatment, your life will be different.

I was on AS for 7 yrs. Numbers got worse. Radiation and ADT (ugh to the ADT). PSA remains 0.02/0.03 after 3 yrs. Here's hoping...

EdinBaltimore

Philip_Craig

Yes, yes, yes get a 2nd and 3rd opinion. GS 6 seems to be on the verge of being put in a “non cancer” category. Tall Allen knows his stuff. Do not rush into surgery. You have time to research this and come to a decision.

MikeyVilla

I was actively watching a 6, when they next found a rapidly growing 7 on the other side and close to my bladder, so i had robotic RP. I was 58. Symptoms are not so bad at all, but I don’t think there is generally support for RP for a 6 unless something unusual. So certainly second opinion as long as that is an option. In my case that 7 had got outside the prostrate but not crossed the margin and was found in some nerves, so still watch carefully.

HopingForTheBest1

Make sure to get at least one of your second opinions from an experienced genitourinary medical oncologist at a major cancer center.

Bruins11

Been there, done that. Gleason 3&4, encapsulated . RP 4 years ago. Successful but dealing with stress incontinence ever since. I’d seriously look into RT before pulling the trigger. Best of luck.

ParrotX in reply to Bruins11

RT plus ADT also has its downsides, so you need to weigh up the options available very carefully. But remember, not everyone will get the same side effects whichever treatment option is chosen, so plan for the worst and very much hope for the best - I seemed to have escaped fairly lightly, and I would hope for the same for you.

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aceace12

OMG .. i would never consider RP with your current numbers ... yes on second and 3rd .. Johns Hopkins.... in some medical journals gleason 6 is not even considered cancer ....good luck

Currumpaw

Hey SKW,

Accurate reconnaissance is the most important part of planning. Surprises can be unpleasant.

A trans perineal biopsy can access areas that a TRUS biopsy can't.

An in bore, real time, biopsy using the mp 3.0T MRI is the best.

Do I need to mention the importance of the experience level of the doctor doing the biopsy?

Avoid the fluoroquinolones like the plague. There are many side effects including aortic aneurysms when these drugs are used. Even just once can be too much. In a meeting of five men, three of us had adverse reactions --one of which--he hadn't heard of the aortic aneurysm warning but had been given fluoros before his diagnosis of an aneurysm.

Rocephin and Cefdinir can be used to prevent sepsis or other infection from biopsy procedures rather than any of the very dangerous fluoroquinolones.

Currumpaw

WilsonPickett

Surgeons like surgery. There are many other options for successful treatment. You have much research you can do, and even more time to do it.

MAL208

I agree that getting multiple opinions is a must. Read up as much as you can. If you are in or near New York, I highly recommend reaching out to Memorial Sloan Kettering. With one phone call, they can set you up with a surgical consultation and radiology consultation. They make the whole process incredibly manageable and the doctors and staff are world class. After consultations, I opted for Brachytherapy and SBRT over surgery and 7 months later couldn’t be happier with the outcome.

Bigm789

Focal Laser Ablation, Dr Eric Walser , UTMB, houston ,tx get a consult

den44

Because of a doubling of my PSA in about 2 years from 2 to 4, I had my first biopsy in 2016. One core was diagnosed as Gleason 3+4 in a small percentage of the sample. I decided on a prostatectomy. It was scheduled about a month later. Based on my research. I had my slides sent to Dr. Epstein. Based on his evaluation, he said the sample was inconclusive and recommended a second biopsy. I immediately cancelled the surgery. The second biopsy found 1 Gleason 3+3 sample. I again sent the slides to Dr. Epstein and he confirmed the Gleason 3+3. The original pathologist that diagnosed it as Gleason 3+4, sent both set of slides to his colleague at Sloan Kettering. That pathologist said both samples were Gleason 3+3. Yes, 3 different opinions on the first biopsy and 3 of the same opinions on the second slide. I had another biopsy 2 years ago and again there was 1 sample diagnosed as Gleason 3+3. I've been on active surveillance since 2016. I get my PSA checked every 6 months and it fluctuates between 3 and 5. I'm 72 years old. Your situation is different from mine, however, I strongly suggest you send your slides to Dr. Epstein of John Hopkins for a second opinion.

miscdenver

There's an appearance that you're getting rushed into surgery.Brachy boost radiation is a good alternative, which I went with after the research I did indicated to me that RP has higher chances of getting me stuck with incontinence for the rest of my life.

A 2nd opinion with a good RO (Radiation Oncologist) is strongly recommended.

Wish you the best with your decision making !

julianc

I didn't do enough research. Had RP as just wanted it out. Annoying side effects. Numbers show right radiotherapy treatment has equally good results at 'curing' but much lower incontinence and ED side effects.

Anomalous

I like the suggestion of TA of getting the Color genetic mutation test, which you can do on your own, to rule out any highly unusual, but possible, genetic problems. Then stay on active surveillance.

Murk

FYI, Went the RP route after the process showed my PCa was advanced (Gleason Score of 5+5). Maybe just lucky but caught it early and it was contained. Just as lucky side effects were minimal. So not everyone's experience with RP is negative but please get more opinions and get comfortable wiht your decision and plan going forward.

Vulcanologist

You need to get second opinion from a qualified Dr. Your Gleason scores are not that high, and most knowledgeable Dr.’s would suggest active suveilance. You should at least get a multi-parametric MRI with a 3T MRI machine, before undertaking any plan. RP is archaic. There are much better ways to address prostate cancer in terms of success and morbidity. An RP will almost certainly guarantee you will be impotent and incontinent. If you don’t know Dr.’s for 2nd and 3rd opions, I highly recomend Dr. Mark Scholz in Marina Del Rey, CA. He is a prostate oncologist who specializes in keeping up with the newest and best options, and managing prostate cancer cases on a consulting basis. He doesn’t do any procedures or have anything to sell, other than his advice and expertise. He does prostate cancer cases no matter the stage. He’s one of the principals of the Prostate Cancer Research Institute. He will do a zoom or facetime conference call for those outside of his area. There are other new tests out there now, including PSMA PET Scan, that can tell you more about the cancer’s agressiveness and its stage.

PTvsPC

You should definitely get at least a 2nd opinion. A 3rd/4th is recommended. I also highly recommend having Dr. Epstein review the biopsy. It's the cheapest few hundred dollars you'll ever spend for such an expert.

Visiting Dr. Scholz is also a possibility, but he's VERY expensive. I don't like his business model, but that's just me.

Another thing to keep in mind is that there are myriad new medical technologies breaking through right now. Several of them are not even related to each other, so there are ground breaking targeted treatments coming that are unique and potentially very effective with little or no side effects.

Two examples to research:

- Theranostics

- "Drug Factory" Seeds

There are more, but these two are on the cusp of emerging.

Sorry you've joined our club. We want you out of this club (as we all want out), but if you have to be here, you'll not find a better group of fellas who have some great info to pass along. I heard about Epstein on this site and it was a game changer for me.

Adf2529

Great advice here. Take your time. I was on AS for two years and finally treated w SBRT. AS isn’t for everyone, and it was difficult for me. Rushing to RP is NOT advised given your stats.

cpcohen

I may have missed something:

. . . What's your PSA history ?

As Tall_Allen points out, the two biopsies sampled slightly different regions of the prostate:

. . . that the second one showed greater percentages of G6, isn't really evidence of "progression".

If you have quickly rising PSA, that might be troubling. But without that yellow flag, I agree with Tall_Allen and the majority:

. . . You sound like a good candidate for active surveillance -- watch, and track,

. . . and don't treat yet.

I had a prostatectomy 15 years ago. Still have ED (injections work, pills and VED don't work), and moderate incontinence (Kegels would help, if I did them regularly). No recurrence.

. Charles

somekindofwonderful

Thank you all for your practical, common sense and responsible replies:)1st

I’ve received Dr Jonathan Epstein’s expert analysis on my recent biopsy. His assistant Suzanne is professional and wonderful! I live in CA and our laws re sending biopsy slides are a bit more challenging but she was able to guide me and get it done in a timely manner!

2nd

I sought an expert 2nd opinion with a Urologist who has completed 2000+ DeVinci procedures as well as fellowship training. This urologist created a plan which includes active surveillance, completing a MRI (T3)

and a decipher prostate test.

3rd

I sought a 3rd opinion from a Urologist/oncologist from Boston. He was very supportive of active surveillance and felt that my original Urologist acted in haste/panic mode when recommending a RP.

Bottom line - Do not panic upon hearing a diagnosis of prostate cancer with Gleason 6’s.

Ask, seek and knock to find your inner peace in making a decision.

Thank you again my male care team and good luck, best of success and believe in your faith!