Conflicting options - should I get a third?

Posted by phbphd1992 @phbphd1992, 5 days ago

Hi Everyone,

I was recently diagnosed with prostate cancer. I’ve received conflicting advice from my urologist and a medical oncologist I saw for a second opinion. I’m looking for everyone’s thoughts on what my next steps should be.

I’m 64 years old, in relatively good health; could lose a few pounds, but nothing chronic. I have no symptoms of anything - as I’ve been telling my urologist (been seeing him for four years now) if he hadn’t said anything, I’d never know anything was wrong.

Total PSA 9.3 (on 10/28/2024)

MRI done on 1/21/2025
Lesion 1 1cm, PI-RADS 4
Lesion 2 .8cm, PI-RADS 3

(FYI, I had a previous MRI on 9/08/2022 that showed one lesion at a PI-RADS 4. Biopsy was negative on cancer. The 1/21 MRIstated “a previously described PI-RADS 4 lesion in the left peripheral zone has resolved with a new lesion superior.”)

Fusion Biopsy done on 5/15/2025
LT Post Lat Periph zone
Adenocarcinoma , Gleason 3+3=6, (Grade group 1), in 1 of 3 cores involving < 5% of the total tissue

LT Ant Trans zone
Adenocarcinoma , Gleason 3+3=6, (Grade group 1), in 1 of 3 cores involving 5% of the total tissue

I’ve not had a PET scan nor Decipher.

I met with my urologist late on a Friday afternoon to go over the results. I could be wrong, but I got the impression that he thought the only recourse would be radical prostatectomy, sooner rather than later. He stated that radiotherapy would end up doing more damage and make future surgery much more difficult. He said a couple of times that surgery is the “gold standard” for this. He did stress that this is a low-grade, slow growing cancer that was caught very early. After a little more discussion I decided on active surveillance. I got the impression he did not think this was the best course of action. It was late on Friday, as I mentioned, so maybe I am wrong.

I got a second opinion from a medical oncologist who was very patient, explained how the Gleason score is derived, etc. He told me that surgery now would be like “killing a bumble bee with a bomb.” He agreed with my urologist that radiation is likely not a good option. He said active surveillance is the way to go since it’s possible I could die of something else first.

So, should I get a third opinion and go with majority rule? What are your thoughts?

Thanks!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

You have a typical case of someone that is being advised by a urologist to have surgery when actually they have very low chance of cancer being a problem for a long time.

You could get a PSE test. It would tell whether or not there are markers for prostate cancer in your blood. They are 94% accurate when it comes to detecting, whether or not you have prostate cancer. At that point, you could get a PSMA pet test to see if maybe it has spread somewhere else.

The opinion of doctors today is that you do not do anything with the low incidence of 3+3 you have. I’m not a doctor so I cannot tell you, but here Are two videos from doctors discussing whether or not active Surveillance makes sense

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


Here is a video by Dr. Epstein discussing active surveillance and more

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Responses to all of your comments/questions —> Your questions are right on target. You should continue to follow the numbers and let those numbers (and others) guide your decision-making.

It’s not that you received conflicting information. It’s that with prostate cancer there is no one right answer. There are many treatments that can successfully treat your condition. What you’ll find it comes down to is that the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer. So, a 3rd, 4th, 5th,….opinion doesn’t really provide any value.

> prostate cancer usually has no symptoms so, your situation of “…. have no symptoms of anything….” is quite normal.

> you mentioned having been seeing your urologist for 4 years; what was your PSA last year? Even though “he hadn’t said anything…”, what did you say about each of your previous four years of PSA results when you saw them?

Other numbers to consider in addition to your PSA of 9.3 ng/dL? (If your PSA reaches 10, something else is going on that another test may identify.)

> what is your PSA Doubling Time?

> what is your % Free PSA?

> do you have a UTI? prostatitis? BPH?

With MRI (PIRADS 3/4) results:

> what is your PSA Density?

> any mention of perineural invasion, seminal vesicle invasion, or extra capsular extension?

What led to you having an MRI in 2022? What concerns led to this scan? In that MRI (PIRADS 4), was there any mention of perineural invasion, seminal vesicle invasion, or extra capsular extension?

In this recent 2025 biopsy, with both lesions being just Gleason 6(3+3), you can be sure that neither your urologist nor your oncologist will be too concerned about this.

Of all possible Gleason scores - 3+3=6, 3+4=7, 4+3=7, 4+4=8, 3+5=8, 5+3=8, 4+5=9, 5+4=9, and 5+5=10 - your 3+3=6 is the very lowest grade. In fact, there’s some debate in the medical community as to whether a 3+3=6 should even be called cancer (since a “3” structure cell can’t metastasize) and therefore shouldn’t be considered as a G7+. (That a 3+3=6 is a harmless benign tumor and shouldn’t necessarily be treated.) With a Gleason 6, they’ll usually recommend active surveillance, unless you have other known risk factors.

> with just a 3+3=6, you might not qualify for a PSMA PET scan, due to the negligible risk of metastasis.

> you should get a biomarker (genomic) test like Decipher, Prolaris, OncotypeDx, or one of a dozen others - whichever one your doctors use and your insurance will pay for.

> you should get a genetic (germline) test.

> others have mentioned a PSE test, an improvement over the standard PSA test,

Since urologists are usually surgeons, they will usually recommend surgery - not because they’re misleading you, but because it’s what they know best. (If all you have is a hammer, everything looks like a nail.)

> with low-grade, localized prostate cancer, there is rarely a reason to treat it quickly. Take your time and get the decision right. You’re the one who has to live with the outcome, not them.

> regarding the urologist’s statement of “radiotherapy would end up doing more damage and make future surgery much more difficult….” demonstrates that he is very old school. With modern radiation if there is a recurrence, you have the options of focal therapy, brachytherapy, SBRT, and even re-radiation (all depending on the nature of the recurrence). Salvage prostatectomy is a last and final option if and only if all other options have failed - and even in that case, palliation might be preferable.

> His statement that “surgery is the “gold standard” for this…” again shows that he is old school. Recent data show that with modern treatment methods, success rates between radiation vs surgery are statistically equivalent.

Yes, if you have no other significant risk factors, active surveillance is usually recommended.

> do you have any 1st-degree relatives with prostate cancer?

Regarding the medical oncologist’s statement of “…. “killing a bumble bee with a bomb….” - though I like the military analogy, I prefer to avoid hyperbolae and try to keep the tone as unemotional as possible.

As for the statement “…. since it’s possible I could die of something else first,” with just a 3+3=6, death would be the last thing on my mind. You’re gonna outlive all of us.

With sinilar numbers as yours, at 56y, I was on active surveillance with a 3+3=6 for about 9 years, giving me time to thoroughly evaluate all treatment options, take advantage of medical advances, and make a calm, informed decision. Take your time……

If you go on active surveillance, get a repeat PSA test in 4-6 months, and track all those numbers and tests mentioned above, you’ll be right on top of this, knowing exactly what’s going on, and be informed enough to make a treatment decision should any of those numbers head in the wrong direction.

You’ll do just fine.

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@phbphd1992
Your post says your Gleason Score is 3+3=6. I don't think they get lower than that for citing differences in normal cells and abnormal cells.

Since you have conflicting information and recommendatins have you considered a third opinion from a major medical institution like Mayo, Cleveland Clinic, John Hopkins, UFHPTI, etc. Most of the time this can be done by sending your medical records to them to review without any additional tests or in person.

For me if I was in doubt this is what I would do. I was lucky that both the instutions I got diagnosis were the same. The only difference was one used proton and the other used photon for radiation treatmens. My Mayo PCP and I went over everything together and decided for me that proton treatment as UFHPTI was the best choice for me.
Good luck!

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It would seem that you have a very incipient cancer; you can certainly do AS.
Or look into much less invasive focal therapy to deal with those areas involved. I agree that surgery NOW is gross overkill.
Phil

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@brianjarvis

Responses to all of your comments/questions —> Your questions are right on target. You should continue to follow the numbers and let those numbers (and others) guide your decision-making.

It’s not that you received conflicting information. It’s that with prostate cancer there is no one right answer. There are many treatments that can successfully treat your condition. What you’ll find it comes down to is that the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer. So, a 3rd, 4th, 5th,….opinion doesn’t really provide any value.

> prostate cancer usually has no symptoms so, your situation of “…. have no symptoms of anything….” is quite normal.

> you mentioned having been seeing your urologist for 4 years; what was your PSA last year? Even though “he hadn’t said anything…”, what did you say about each of your previous four years of PSA results when you saw them?

Other numbers to consider in addition to your PSA of 9.3 ng/dL? (If your PSA reaches 10, something else is going on that another test may identify.)

> what is your PSA Doubling Time?

> what is your % Free PSA?

> do you have a UTI? prostatitis? BPH?

With MRI (PIRADS 3/4) results:

> what is your PSA Density?

> any mention of perineural invasion, seminal vesicle invasion, or extra capsular extension?

What led to you having an MRI in 2022? What concerns led to this scan? In that MRI (PIRADS 4), was there any mention of perineural invasion, seminal vesicle invasion, or extra capsular extension?

In this recent 2025 biopsy, with both lesions being just Gleason 6(3+3), you can be sure that neither your urologist nor your oncologist will be too concerned about this.

Of all possible Gleason scores - 3+3=6, 3+4=7, 4+3=7, 4+4=8, 3+5=8, 5+3=8, 4+5=9, 5+4=9, and 5+5=10 - your 3+3=6 is the very lowest grade. In fact, there’s some debate in the medical community as to whether a 3+3=6 should even be called cancer (since a “3” structure cell can’t metastasize) and therefore shouldn’t be considered as a G7+. (That a 3+3=6 is a harmless benign tumor and shouldn’t necessarily be treated.) With a Gleason 6, they’ll usually recommend active surveillance, unless you have other known risk factors.

> with just a 3+3=6, you might not qualify for a PSMA PET scan, due to the negligible risk of metastasis.

> you should get a biomarker (genomic) test like Decipher, Prolaris, OncotypeDx, or one of a dozen others - whichever one your doctors use and your insurance will pay for.

> you should get a genetic (germline) test.

> others have mentioned a PSE test, an improvement over the standard PSA test,

Since urologists are usually surgeons, they will usually recommend surgery - not because they’re misleading you, but because it’s what they know best. (If all you have is a hammer, everything looks like a nail.)

> with low-grade, localized prostate cancer, there is rarely a reason to treat it quickly. Take your time and get the decision right. You’re the one who has to live with the outcome, not them.

> regarding the urologist’s statement of “radiotherapy would end up doing more damage and make future surgery much more difficult….” demonstrates that he is very old school. With modern radiation if there is a recurrence, you have the options of focal therapy, brachytherapy, SBRT, and even re-radiation (all depending on the nature of the recurrence). Salvage prostatectomy is a last and final option if and only if all other options have failed - and even in that case, palliation might be preferable.

> His statement that “surgery is the “gold standard” for this…” again shows that he is old school. Recent data show that with modern treatment methods, success rates between radiation vs surgery are statistically equivalent.

Yes, if you have no other significant risk factors, active surveillance is usually recommended.

> do you have any 1st-degree relatives with prostate cancer?

Regarding the medical oncologist’s statement of “…. “killing a bumble bee with a bomb….” - though I like the military analogy, I prefer to avoid hyperbolae and try to keep the tone as unemotional as possible.

As for the statement “…. since it’s possible I could die of something else first,” with just a 3+3=6, death would be the last thing on my mind. You’re gonna outlive all of us.

With sinilar numbers as yours, at 56y, I was on active surveillance with a 3+3=6 for about 9 years, giving me time to thoroughly evaluate all treatment options, take advantage of medical advances, and make a calm, informed decision. Take your time……

If you go on active surveillance, get a repeat PSA test in 4-6 months, and track all those numbers and tests mentioned above, you’ll be right on top of this, knowing exactly what’s going on, and be informed enough to make a treatment decision should any of those numbers head in the wrong direction.

You’ll do just fine.

Jump to this post

If you go to a surgeon often enough you will end up with surgery as one surgeon told me. "That's what I do". If a third opinion would give you peace of mind, perhaps you should. I would think of it as a tie breaker.

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2010 proton radiation at Loma Linda Children's Hospital in Loma Linda, California..a pioneer in proton radiation therapy. Gleason 3 plus 3 with slow-growing prostate cancer. In 2017, PSA began to rise from near zero to its current 5.46. In the last six months, MRI and PET scans. Either has detected prostate cancer..or "might be", but cannot be certain as the urologist indicated.

What to do? Absolutely in excellent health; no urinary issues or others..all normal functions. I recognize PSA increases with age, regardless of any issues with prostate cancer. Therefore, active surveillance is the option I am following at this time. As one responder stated, most men die with prostate cancer and not because of prostate cancer. I suspect that will be my case. For those who have a doctor-recommended surgery, please give this option your utmost research and consideration. Over the years, reading comments heretofore, surgery often causes more problems than before surgery. Seek out multiple options and opinions.

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I think at 3 + 3, most urologists I've talked to or heard about on here will recommend active surveillance. But, don't rely on internet strangers to tell you what to do with your health and your life. If you have two conflicting opinions then, without a doubt, get a third - and a fourth and fifth if needed. I talked to 9 before I pulled the trigger.

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@westernflyer

2010 proton radiation at Loma Linda Children's Hospital in Loma Linda, California..a pioneer in proton radiation therapy. Gleason 3 plus 3 with slow-growing prostate cancer. In 2017, PSA began to rise from near zero to its current 5.46. In the last six months, MRI and PET scans. Either has detected prostate cancer..or "might be", but cannot be certain as the urologist indicated.

What to do? Absolutely in excellent health; no urinary issues or others..all normal functions. I recognize PSA increases with age, regardless of any issues with prostate cancer. Therefore, active surveillance is the option I am following at this time. As one responder stated, most men die with prostate cancer and not because of prostate cancer. I suspect that will be my case. For those who have a doctor-recommended surgery, please give this option your utmost research and consideration. Over the years, reading comments heretofore, surgery often causes more problems than before surgery. Seek out multiple options and opinions.

Jump to this post

FWIW, completed Proton at a COE in February 2025. In my final 2 weeks of Orgovyx now. PSA at 3 months post treatment went from 6 to < 0.04 and T is < 10. The good numbers are probably reflecting a combination of the treatment and the Orgovyx, and PSA is expected to rise after I cease Orgovyx. But my RO said that PSA of 2 is now the cutoff. If it rises to or above that it indicates recurrence. Decipher score pretreatment is high risk at 0.78.

Good luck.

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"Conflicting opinions" are common especially with "low risk" clinical markers such as yours. If you feel that getting a third opinion might help you decide between AS and definitive treatment, then you should strongly consider getting that third opinion from a doctor at a center of excellence. And as others have mentioned, you should also consider getting one of the genomic tests. I had "low risk" clinical markets similar to yours and was likewise getting "conflicting opinions"; but after my Decipher came back high risk and considering my concerning family history, I choose to have a radical prostatectomy at a center of excellence and performed by a national known surgeon a couple of months ago. Even though dealing with annoying albeit improving incontinence, I'm glad I had the surgery as my post surgical biopsy upgraded me to 3+4 and I just sleep better knowing that I moved forward with definitive treatment.
Best of luck as you move forward on you journey.

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I had a radical postrate surgery at 53 yrs of age
I'm 75 now. If you get radiate it's strike two. strike three
chemotherapy. Having a radical is strike one. After that it's radiation. Once you
get radiated for a surgeon everything turns to leather.
and because of that I was told a lot of surgeons won't
operate. It's a very delicate surgery. So if you elect to have surgery make sure the surgeon has preformed this surgery numerously several times a month for years.
My surgeon was: https://drcatalona.com/q-a-prostate-cancer/#

Send him your email
Thanks Scott 414 322 3053

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