I have a history of prostate cancer in my family. My father had it, and my brother had it and he had his prostate removed. As a result, for the last 13 years, I've had my PSA checked every six months. I typically run a very low PSA, historically .5 or .6. About 18 months ago I noticed that my PSA was rising, from .63, then .75, then .89, and then in September, it was .97. When I took my PSA recently, it had gone down to.87. As it was rising, I got very concerned and I asked my urologist to order me a 4K score test and an MRI. The four K score test came back with 8.2%, and the PSA at the time was down to .69. My MRI came back with a Pirads 3 and it had identified two lesions of concern. However, the lesions were described as "most likely atypical BPH nodules". All of my DRE's indicated no suspicious areas. I then decided to have a biopsy just for my peace of mind. The biopsy came back with a Gleason score of 7 on 4 of 16 core samples, two were 4 + 3, and two were 3 + 4.
So, my question is, is it possible that these 4 supposedly cancerous core samples, presumably taken from the two lesions, are not actually cancer, but instead something else that mimics cancer cells? In other words, is it at all possible that these are false positive results? And if so, how would I be able to find this out definitively?
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Tall Allen, I am incredibly impressed with the depth and breadth of your knowledge on prostate cancer, and your ready access to a plethora of empirical data to support your opinions and positions. I know you're not a doctor, but I would love to hear your thoughts on my situation. As you know, I was recently diagnosed with prostate cancer, two lesions identified on a MRI and a targeted fusion biopsy indicated Gleason score of 4 + 3 on one lesion, and 3+4 on the other. I don't believe that any other cancer came up on the randomized biopsies, but I'm not sure. A total of four cancer cores out of 16. My decipher score test came back where I'm in the low risk category, although my doctors tell me that based on my Gleason score, I am in the unfavorable intermediate risk category. Not exactly sure what that means. This week, I am scheduled for my PMSA test, and I am scared to death of the results. My own urologist is pretty much inaccessible, so I do not have his guidance to rely on, so I've been speaking with doctors who specialize in various niches, surgery, RT, proton, brachy, focal, etc. They all seem to have strong biases to their trade and expertise. My brother, who has had his prostate removed, and some of my friends who have followed the same path keep telling me that I am crazy and irresponsible if I do not immediately go to surgery. However, based on my independent research and talking to people, I am leaning towards proton beam therapy. Here's where I would like to hear your thoughts. From what I read, and I am a novice, the success rates, reoccurrence rates, progression rates, etc, show that surgery, RT, and PT all are about the same. I also see that the side effects of proton are superior to surgery. Does your data support that conclusion? Next, different doctors suggest different protocol proton treatments. The proton guy at u of f suggests 20 plus treatments, with a boost to the areas in which the lesions are located, followed by 4 to 6 months of hormone therapy. The proton guy at Mayo, on the other hand, is strongly suggesting a higher intensity, five treatment protocol with no boosting, just equally spread over the entire area. He is also suggesting hormone therapy for the next 4 to 6 months. The radiologist here at University of Miami, where I live, said that there are three new hormone deprivation drugs that actually accomplish the same thing, but does not reduce the testosterone. Those three drugs, if I wrote them down correctly, are Enzalutamide (Xtandi), Apalutimide (Erleada), and, Daralutimide (Nubeqa). (The radiologist also said that there is one study that shows that Apalutimide is better than Daralitimide). So my next question to you, if I did the proton therapy, do you see the same success rates with the higher intensity, five session protocol versus the 20-something, or even as high as 40 something sessions with the boosting factor that university of Florida recommends? Finally, what are your thoughts on the 4 to 6 month hormone therapy after the conclusion of the proton therapy? They tell me that it increases the success rate by 5%. Do you agree with that assessment? Do you agree with the radiologist from University of Miami as to these three drugs that will not strip out my testosterone yet accomplish the same effect? Even if they do strip out my testosterone, what does your data show of the recovery rate from when I stop taking the hormone treatments after 4 to 6 months? Finally, do you see any difference at all if I did the proton treatment from one facility to the other? I am impressed by University of Florida's facility in Jacksonville, but I live in Miami and it would certainly be more convenient for me to do therapy either at University of Miami or at Baptist hospital, also in Miami, where they also have a proton machine. Mayo in Rochester tells me that they are more experienced at this than anyone else in the world, doing 600 to 700 SBRT's (not sure what that is) per year, with a machine that has 4 gantries... Anyhow, I am so sorry to lay all this on you. However, I am being pulled in so many different directions, everybody has their own strong proclivities as to what's best for me, I would really rather avoid the surgery, unless it is determined that it is imprudent to do so, and I am just dazed and confused and scared. I do feel comforted by this blog site since, unlike talking to doctors, you all really know what it feels like to be on the receiving end of PCa and treatment options and having to make risk-based decisions. Any thoughts, insights, studies or data that you can send my way would be a great relief for me. And of course, I would welcome anybody else out there that has knowledge or expertise with my situation as well. Thank you so much.
Proton seems to have results that are no better and no worse than X-rays. Proton advocates have resisted doing any randomized trials, because a result showing no difference or worse comparative outcome would lose them a lot of money. As a result of their reluctance to provide proof, many private insurance won't cover it. Here's the data from UF Jacksonville:
Allen, do you know of any studies on proton beam therapy that compares 5 higher intense doses, versus the 26+ doses at lower intensity but boosting at the specific tumor locations, for localized prostate cancer?
Very unlikely to be a false positive. The good news is the cancer is probably confined to the prostate. You are lucky compared to those of us with high volume metastatic cancer. You might be able to ask for a second opinion on the biopsy samples, but it is probably not worth it.
Have a second read of the biopsy samples done. John Hopkins is suggested if you're in the USA. I had 3 reads of mine, due to similar concerns (granulomatis material found..) Three pathologists agreed, 2 at 9G, 1 (John Hopkins) at 10G.
IME multiple opinions of pathology and radiology can be very useful; necessary in my case . And one can always consider a second biopsy ; I did but decided not to. My first biopsy pathology opinion was 3+3. Second and third opinions 3+4. Final after RP - 4+3. Multiple mpMRI radiology opinions concurred on imaging findings and felt my cancer was worse than 3+3. Although you did not ask, my own PSA fluctuated during my years of screening in my 40's and 50's. Because my DREs were always clear (I did not appreciate back then that many/most DREs miss earlier stage cancers, and as in my case, ones tucked in and out of reach), we dismissed my fluctuating PSAs. After my RP I graphed my years of fluctuating PSAs. Turned out, the lows were actually a steady rise. Because of wrongs of guidelines and all the myths/misinformation, my doc and I dismissed the vary thing we were screening for - cancer.
Thank you for your reply. What does RP mean? Also, not sure I understand. Your biopsy readings varies from 3+3 to 4+3? How could there be such subjectivity in these readings to create such a variance? Treatment options can vary so significantly depending on what your G score is.
RP, radical prostatectomy, surgery. I came to learn pathology is opinion - in my speak kind of like ink blots. The 3+3 vs 3+4 is an example. My final 4+3 was based on full pathology of prostate gland - not a limited needle biopsy. So turned out my biopsy samples missed the worst bits. In my case the two mpMRI indicated the more serious 4+3. Yes big decisions rely on opinions.
Thank you for clarifying. Inaccuracies of biopsies, as was the case with you, underscore the difficulty in locking into a treatment option with a high level of confidence that it is the appropriate course of action. For example, with a 3+4 before your RP, you could have pursued active surveillance or a less aggressive treatment option than RP, and, in hindsight, it would clearly have been a mistake. And for that matter, why did you choose RP over the non-invasive proton therapy? Sorry for all the questions, is just that the PCa bomb was just dropped on me after having been given assurances by two prominent prostate oncologists that I was fine and a biopsy was not necessary or recommended. So now I'm scared and confused...
My diagnosis and first treatment selection were nine years ago. For diagnosis confidence, I learned while seeking consultations in England that they strive to align pathology and mpMRI findings. As for surgery, initially I tried to avoid it for all the ‘fears’. The cyberknife RT and HIFU docs I consulted with recommended surgery, based on my two mpMRIs, which indicated to them insufficient margins for their methods. The surgery benefits I came to appreciate and benefit from are immediate removal of tumor burden and ability to test usPSA to levels below <0.010; which I chose to rely on for best indicator (I do not think in terms of ‘undetectable'). From my diagnosis my goal and hope has been curative, and if not achieved, which seemed unlikely at the outset, was/is to avoid/defer ADT/chemo/castration resistance for as long as possible (years). IMO US docs are up against (incorrect) guidelines and dated clinical practices that leave us, the individual patient, at a disadvantage. Recently often referenced Dr. Kwon, Mayo Clinic, spoke of rising death rate, rising recurrence rate, and rising number of men of ADT, despite all the technical diagnostic and treatment advancements. IMO why we patients need to be patient detectives, patient scientists and very strong self-advocates.
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