Significant disagreement between 1st and 2nd opinions, what to do?
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!
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twhite33, you might take a third opinion from a radiation oncologist. Of course no one knows, but you are getting evidence based opinions. Personally I wouldn't be satisfied without opinions from two surgical oncologists and two radiation oncologists (at least). They will all review the scans and it is nice that your have conflicting pathology opinions.
Surgery, Radiation or Watch aren't your only options. Some onsite have had success with Tulsa Pro and other option.
Welcome to this site with it's lively gentlemen ready to weigh in.
You do have a cancer that’s growing. You are a Gleason seven. You say you went to a urologic oncologist, did you mean a Genito urinary oncologist, They specialize in treating prostate cancer patients. If the person you saw was a urologist that is also an oncologist then they are more likely to recommend surgery since that is their business.
Your best bet is to contact a Center of excellence, they would have multiple doctors getting together to figure out what’s the best treatment for you is. Your PI-RADS 3 lesion is not real important.
You need to see A radiation oncologist, and discuss what your options are with them.
You could then look into the following options which don’t involve radiation. HIFU , Cryoabalation , NanoKnife , TULSA PRO.. Almost all would be quite appropriate with your early case of prostate cancer.
TULSA-PRO is very popular with some users in this forum.
Thanks for sharing your journey in such detail, kudos especially for consulting a prostate oncologist (like Mark Scholz). Urologists are biased to surgery and RO’s to radiation. I did proton (Mayo PHX) 6 years ago when my numbers were a little higher than yours; I just got my latest..,PSA holding at 0.2. I think you’re doing everything right…best of luck and “don’t look in the rear view mirror”.
@twhite33
As you have learned MRI do not diagnose cancer. It is done with biopsies. A Gleason score can be subjective from one pathologist to another. They are looking at your prostate healthy cells versus the abnormal looking ones.
This information is not from any medical knowledge I have but what is told to me by my urologist at Mayo, the R/O at Mayo, and R/O at UFHPTI. That is why all my doctors recommended the Decipher test, PSMA, bone and one the bone scan.
If you think you are not getting specific advice you need me would get a third opinion from a major medical institution that is experience in prostate cancer. Most all can do a 3rd opinion by you sending your medical information and tests to them. Some like mine will want additional tests done before giving you a diagnosis and treatment options.
I know this is a lot and most of us have been through the long journey as yours. It can be highly stressful. But it is your body, your specific cancer, and thus has to be your specific decision.
Sounds to me that you are very well informed concerning your current condition and anything I can offer is just a garnish.
But it DOES seem that your PSA numbers are headed in the wrong direction and you will need intervention of some kind. As jeffmarc and others have pointed out, there are a variety of options open to you at this point that may not involve surgery or radiation. But to wait until something more pathological occurs may push you out of those less invasive choices.
But I am a pro-active person not willing to sit on anything that might get worse, so please take my advice from where it comes. You may be the opposite, so ultimately you have to be true to yourself and act when you feel the time is right. Best
Phil
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.
It's hard when you get different opinions. Perhaps you need a tie breaker? In my case I was uncertain about continuing Lupron. After talking to my urologist I contacted 2nd MD. VERY IMPRESSED! They gathered all of my records and set up a video chat with a specialist in Boston. His resume certainly was impressive. We spoke for about an hour before I had my decision. I really don't know who paid for the service as it was presented to me as a benefit from my former employer. (I'm retired and buy back into the group for my Medicare supplement.) I strongly suggest you give 2nd MD a try. Best of luck
You left off one thing, What was your decision? Stop Lupron right away, or keep going with it?
twhite33 First , with your Gleason scores , I would not be dashing out and getting any treatment at this juncture .
Additionally your increasing PSA ( DOUBLING TIME ) is really also a non issue . The small increses could be contributed to by numerous , non cancerous issues . Infection , BPH ( Your prostate increases in size as you age etc ) You have all this data available in Dr. Walsh's book . Have you had a 2nd or 3rd opinion of your Biopsy pathology results to nail down or confirm your Gleason Score . I have Gleason 6 in 4 cores and Gleason 33 + 4 = 7 in 2 cores . My Urologists & Radiation Oncologists at " Centers of Excellence " _ all agree to Active Surveillance at this time . PSA Every 3 months , I had a Bone & CT Scan both clear , and an MRI 1 year after my first , which showed no change in my PI RADS 5 , or change in my tumor size . I have been on AS for 14 months .
An option which I may review going forward , if necessary is : Monotherapy SBRT . A 5 treatment Mon- Wed - Fri and Mon - Wed the following week . Mono : NO ADT which side effects are worse than the disease . I am for quality of life -- Breathing and suffering is not living .
Good Luck .
p.s. If you mast have another Biopsy go for the latest Transperineal MRI Fusion Biopsy . NOT THE Transrectal .
Countries have started to ban the Transrectal . The in-bore ( Gantry ) or Real Time Biopsy is the next and highest end biopsies however the hospitals and clinics are few and far between with this procedure available .
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.