Significant disagreement between 1st and 2nd opinions, what to do?

Posted by twhite33 @twhite33, Jan 24 9:45am

Advance apologies for the length of this post. I believe I am at a crossroads in my PCa journey and am soliciting opinions on how others might proceed in my situation. Note: I have nothing but respect for all of the physicians mentioned here.

I am 67. Mother died at 49 of pancreatic. Two sisters with breast cancer, one survives the other tested positive for BRCA2 and suffered many setbacks before succumbing at 68. I have tested negative for BRCA2.

Since my early 50’s my urologist in a small city in upstate NY has been tracking my PSA because 1) it was high for someone my age, and 2) my family history. I had my first biopsy (TRUSP) at 55, and it was negative. Fast forward 10 years through steady rise in PSA and an intervening negative MRI, to the spring of 2023. My PSA was up to 9.3. I reluctantly agreed to another TRUSP. Pathologist reported 3+3 in 1 core and 3+4 in 2 cores, the other 9 were clean. Doc spent a good hour consulting with my wife and I, and offered to refer me to both a radiologist and a surgeon to discuss possible treatments. I chose to follow AS protocol, which he supported while also registering concern about the 3+4.

Spring of 2024 and PSA up to 9.6 and another TRUSP performed. The pathologist reported a slight increase in cancer detected, but still only 3+3 (5 cores) and 3+4 (2 cores). Doc again suggested, this time more urgently, that I see a radiologist and/or surgeon. I talked with his recommended surgeon in Albany, NY who is a highly regarded robotic expert. Surgeon ordered MRI and PSA monitoring. The MRI showed a ‘small PI-RADS 3 lesion in the left peripheral zone’.

In November of 2024 PSA topped 10 and this seemed to be the surgeon’s threshold level. I asked for a genomic (Decipher) test, and the Genomic Prostate Score was ordered because he was more familiar with it. My score was 24. Per the surgeon, under 20 is good, over 40 is bad, and in between is not particularly helpful. He ordered one more PSA test in 3 months (basically now) and recommended treatment if it is still trending up.

At this point I decided I did not want to say yes to surgery without getting a 2nd opinion. I booked an appointment with a urologic oncologist at the Levine Cancer Institute in Charlotte NC. Prior to my visit an over-read of my MRI was done and a pathologist there reviewed my biopsy slides.

Cutting to the chase, Levine pathology only saw 3+3 in my biopsy tissue, and the MRI over-read yielded ‘PI-RADS 2 - Low (clinically significant cancer is unlikely to be present)’. The doctor's opinion was that surgery at this time would probably constitute over-treatment, even if he HAD found 3+4. His recommendation was for PSA monitoring at 6 month intervals and a trans-perineal biopsy in 2 years. He gave significant weight to my negative BRCA test.

Obviously, much has been discussed that is not included here in the interest of (haha) brevity. If I missed something important, I’m sure you’ll let me know. I am leaning heavily toward the Levine doctors recommendation, but would be interested in what others think. Thank you for reading!

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

@remington

I was really having a hard time with the side effects and after 18 months using Lupron my PSA was undetectable so I discontinued it. Now after 18 months w/o my PSA is .01, which was expected. Urologist has set a threshold of 2 before we reconsider treatment.
My Gleason score was 8, stage 1, and I would have preferred surgery but I was having some severe blood pressure problems and the surgeon flat out told me I'd die on the table. That left me with the only option of hormone treatment and 20 sessions of radiation. Hope this helps.

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Your PSA results are great. Some people with an 8 are able to be cured, meaning it doesn’t come back. I know a few over at Ancan.org who live with it for decades without reoccurrence.

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@twhite33

Thanks so much to you all for your helpful responses. I appreciate you taking the time to think about my situation! I will admit to being naive about much that is available to PCa patients these days.

I did purchase the latest edition of Dr. Walsh’s book and spent some time reading the chapter on focal therapies. My main takeaway was that these treatments, relatively speaking, are still in their infancy, or maybe toddlerhood. More specifically, long term studies have not yet proven them to be reliably curative. My current thinking is that if I am going to risk my continence (by far my number 1 concern today), among other things, I would like to maximize my chances of being done after one form of treatment. Additionally, the need for continued biopsies after treatment is a big deterrent for me. For those of you reading this and thinking, “hey pal, biopsies are a walk in the park compared to the things I have been through”, I get that. I do consider myself extremely lucky that my cancer was caught early and that my risk is comparatively low.

My lack of enthusiasm for radiation really stems from the same place. If I need to treat my cancer, I want to do it once. My perception is that removing my entire prostate through robotic surgery, by a skilled and experienced surgeon, is my best bet for completely eliminating the cancer with the lowest risk to my existing lifestyle. Might this perception change if I seek more opinions and learn more about other options? Undoubtedly, it might. On the other hand, my current situation allows me the luxury of saying there is more to life than cancer and I don’t want to become obsessed, or burden my loved ones with that obsession. Besides, I’m already obsessed with pickleball, I have no time for another obsession. We all have our interests and hobbies, but learning everything there is to know about prostate cancer treatment doesn’t really stimulate me. I can see how that might seem odd.

Here is what my 2nd opinion doctor said that most resonated with me:

Nowadays, nearly everyone who starts with Gleason scores similar to mine, are either eventually cured, or never need treatment. Any treatment you undergo now carries with it risks to your current quality of life. Everything about your current scores suggest a non-aggressive form of cancer. It can change, but even if it does it is unlikely to occur rapidly, and should be caught in plenty of time with 6 month PSA monitoring and biennial biopsies. If you get 2, or 5 or 8 or 10 more years without having to risk your current lifestyle, that might be worth it. Not everyone wants to live with a cancer that can be cured now, but some are okay with it.

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Please don’t think that surgery is a definitive treatment for PCa! Doesn’t matter which TopDoc expert does the procedure; surgery has a 30-35% failure rate ((recurrence after surgery) and has a significant impact on your quality of life - impotence, incontinence, etc.
No treatment is without failures -none of them. All in all, if your cancer is confined to the gland (cannot guarantee this either), an excellent treatment is 5 sessions of SBRT using MRI guided technology: it has documented less marginal tissue damage, leading to better quality of life. Proton therapy is also excellent, but I am not aware of any head to head comparisons of it with MRI guided photon therapy but others on the forum may know of them.
Your overall strategy of being cautious before diving into anything is excellent, but this is a slippery adversary and there are NO guarantees of cure with any of the current treatment modalities.

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@heavyphil

Please don’t think that surgery is a definitive treatment for PCa! Doesn’t matter which TopDoc expert does the procedure; surgery has a 30-35% failure rate ((recurrence after surgery) and has a significant impact on your quality of life - impotence, incontinence, etc.
No treatment is without failures -none of them. All in all, if your cancer is confined to the gland (cannot guarantee this either), an excellent treatment is 5 sessions of SBRT using MRI guided technology: it has documented less marginal tissue damage, leading to better quality of life. Proton therapy is also excellent, but I am not aware of any head to head comparisons of it with MRI guided photon therapy but others on the forum may know of them.
Your overall strategy of being cautious before diving into anything is excellent, but this is a slippery adversary and there are NO guarantees of cure with any of the current treatment modalities.

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While I am fully aware that radical prostatectomy is not guaranteed to cure my cancer, hearing that 30-35% percent of RP patients experience a recurrence does surprise me a bit, if that is indeed what you meant. Does surgery equate to RP, or is it a broader category? And am I correct in assuming these percentages include all RP's, regardless of whether or not cancer had spread beyond the gland?

I'm sure I am guilty of some level of rosy thinking about my own case, but I'd be curious if people disagree with my perception that RP has the best chance of being a one-and-done treatment for a cancer that has not moved beyond the prostate? Probably too many variables to say with any certainty (and again, there is the unpleasant issue of continuing follow-up biopsies with focal therapies).

I'll just say it...radiation really scares me. I can't help thinking that a precisely wielded scalpel
will be more likely to remove all that is needed without going beyond what is needed than some poisonous, semi-predictable, particle-emitting chernobyl-seed being plunked down into a cozy warm bed of fragile soft-tissue. However, I need to learn, so I will take your advice and read about real people's experience with the treatments you mention. Thank you, Phil.

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@twhite33

While I am fully aware that radical prostatectomy is not guaranteed to cure my cancer, hearing that 30-35% percent of RP patients experience a recurrence does surprise me a bit, if that is indeed what you meant. Does surgery equate to RP, or is it a broader category? And am I correct in assuming these percentages include all RP's, regardless of whether or not cancer had spread beyond the gland?

I'm sure I am guilty of some level of rosy thinking about my own case, but I'd be curious if people disagree with my perception that RP has the best chance of being a one-and-done treatment for a cancer that has not moved beyond the prostate? Probably too many variables to say with any certainty (and again, there is the unpleasant issue of continuing follow-up biopsies with focal therapies).

I'll just say it...radiation really scares me. I can't help thinking that a precisely wielded scalpel
will be more likely to remove all that is needed without going beyond what is needed than some poisonous, semi-predictable, particle-emitting chernobyl-seed being plunked down into a cozy warm bed of fragile soft-tissue. However, I need to learn, so I will take your advice and read about real people's experience with the treatments you mention. Thank you, Phil.

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Studies have shown that an RP and radiation have about equal long-term results. With your case, it’s probably unlikely you’re going to have reoccurrence with either technique since It is so slow growing.

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@twhite33

While I am fully aware that radical prostatectomy is not guaranteed to cure my cancer, hearing that 30-35% percent of RP patients experience a recurrence does surprise me a bit, if that is indeed what you meant. Does surgery equate to RP, or is it a broader category? And am I correct in assuming these percentages include all RP's, regardless of whether or not cancer had spread beyond the gland?

I'm sure I am guilty of some level of rosy thinking about my own case, but I'd be curious if people disagree with my perception that RP has the best chance of being a one-and-done treatment for a cancer that has not moved beyond the prostate? Probably too many variables to say with any certainty (and again, there is the unpleasant issue of continuing follow-up biopsies with focal therapies).

I'll just say it...radiation really scares me. I can't help thinking that a precisely wielded scalpel
will be more likely to remove all that is needed without going beyond what is needed than some poisonous, semi-predictable, particle-emitting chernobyl-seed being plunked down into a cozy warm bed of fragile soft-tissue. However, I need to learn, so I will take your advice and read about real people's experience with the treatments you mention. Thank you, Phil.

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Hey man, no need to apologize: radiation IS scary!! I practiced dentistry for 42 yrs and hid, ran and ducked from it in all that time…..BUT!
That kind of full body low level dosing is much more dangerous than a precise ultra narrow beam of photons (or protons which do NOT extend past the target) aimed by sophisticated computer technology, tested daily. It is NOT Chernobyl any more than robotic prostatectomy is a Civil War amputation.
But what happens if you have your prostate cancer (confined to the gland with no evidence of spread as mine was) removed by one of the best surgeons in the world (like mine was)…..and wind up with recurrence 5 yrs later? You then have to do radiation. The irony was not lost on me that I had to lie on a table and voluntarily have myself zapped with 10,500 units of radiation after running from it for most of my adult life! I really had no choice if I wanted to get this shit before it got me, so that’s the long and short of it.
Whatever you decide on - whatever treatment choices you make - will be the correct decision; there are no wrong choices. But just remember that you always need a plan B whether you thought you did or not….Best
Phil

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You might be a good candidate for Tulsa Pro. Lots of info on this forum. Low risk of side effects and all other options remain available down the road if needed. My story:
https://connect.mayoclinic.org/discussion/tulsa-pro-experience-mayo-clinic-mn-july-2024/

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