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Certainly Not Under the Bell Curve

While chasing some mild anemia, my primary decided we needed to run a PSA. Quite a shock when it came back at 16. I had zero symptoms, even of BPH. Routine DREs had always and were normal. PSA had been almost at zero when last checked 15 years prior. We waited a couple of weeks, ran it again and this time it was 19.8, however I had a mild UTI so antibiotics. Referred to a urologist. 1st one I fired immediately after the visit, major personality clash. 2nd urologist is a keeper. He listens and we have been jointly plotting the course.

First diagnostic tests

First he wanted to ensure that the PSA was not due to lingering asymptomatic prostatitis so 4 weeks on Cipro, test again and some improvement with PSA dropping to 14.2, but way short of what had been hoped. Unlike most urologist, mine wanted to get a full PIRAD 3T mpMRI of the prostate to get a lay of the land as we both anticipated cancer would be indicated and it would give him targets for a biopsy. MRI performed and much to our surprise, PIRAD 2 and NO focal lesions found. In fact other than a couple of minor (about .5mm) BPH consistent nodules in transition zone (why the PIRAD 2 rather than a 1), the MRI images were totally clean. He talked to the radiologist and the prostate oncologist that wrote the report and they indicated that they simply could NOT find a single thing anywhere. BTW, my prostate was completely normal in size at 20cc.

Seeking other testing options

So we are at a decision point. We are trying to locate anywhere that does prostate shear wave elastography which might gives us a target area. Without the SWE I am faced with a standard 12 core stab in the dark biopsy that in my case has 80% odds of not finding anything and virtually a zero chance of finding clinically significant cancer. Yet, there is that nasty PSA #. Very conflicted as to how to proceed. Not really wanting an unnecessary and likely meaningless biopsy as we all know finding nothing means nothing but a repeat biopsy. The risks from TRUS-B really make me question preceding and the risk from transperineal…well that is a non starter as well. I am really of the mind to put a hold on any further exploration and continue to monitor my PSA along with another mpMRI down the road.

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Comments

  • davidt author
    2 months ago

    It has been a long 9 months. I did have my urologist go ahead do a 16 core systematic biopsy shortly after my last post as my PSA level simply refused to respond to antibiotics sufficiently to calm conerns. Unfortunately even though my uro did 4 anterior cores (conscious sedation), along with a 12 core systematic, nothing was found. I suggest we run a PCA3 test and it came back 44 which indicated 85% odds of finding clinically significant PCa on the next biopsy. We waited 6 months post MRI (early July) to repeat. On this 2nd mpMRI, the lesion appeared. Right anterior in the apex region about 7-8mm in size, PIRADS 4. My uro stated it was not that the lesion had grown as much as evolved to where it appeared in the computed diffusion imaging series of the MRI. He further added that standard urology guidelines would have NEVER found the lesion in time to avail all the treatment options for consideration. This allowed us to proceed with a targeted biopsy (FUSION) and my uro was able to core the lesion 4 times along with another systematic biopsy again under conscious sedation. The location was such that my uro added that without either Fusion or in bore MRI, NO biopsy could confidently core the lesion due to it location. Everything once again was outside the bell curve. The systematic was once again clean, but the lesion was PCa, GL 7 (3+4) 40% GL4. The diagnosis was T2b as there was no sign of extra capsular extension and not other indications of other lesions in the MRI, which of course does NOT mean none exist.

    So began the treatment journey. My uro’s generally calm demeanor changed to one with a strong sense of urgency due primarily to the PSA combined with the location.

    I consulted with our local proton beam facility director but he was myopically focused on long term ADT adjuvant to the radiation. I was not convinced of the value of such. Strike 1.

    I traveled to consult with the only center in the US doing Retzius Sparing prostatectomy only to discover that again my PSA and PSA density had apparently convinced the surgeon that rather draconian surgical interventions beyond a minimal prostatectomy was in order. Strike 2.

    Last stop was a local MD/PhD radiation oncologist as I wanted to give more traditional radiation treatment consideration. Completely different response from this oncologist. 1st he stated that my cancer was in the curable class and cure to him meant after initial definitive radiation, nothing more, nothing later, the cancer would not return, PERIOD! and he gave me 95+% odds of that outcome. He also was not a proponent of ADT in my situation seeing it as inflicting far too much diminishment of quality of life for what little return it would provide. Clearly an unconventional approach but again, I was NEVER under the bell curve, so why should my treatment be any different.

    He uses the latest Varian RapidARC equipment which uses realtime imaging and no internal fudicial markers (2 tiny tattooed dots at widest part of pelvis for initial alignment). The simulation has been performed and planning is underway to determine the exact treatment plan but he told me to expect 40-48 sessions M-F. Given that I have avoided surgery and ADT, 8 weeks of my life seems very reasonable. He said given the small size of my prostate, he did not anticipate I would even have the most minimal side effects and even if they did appear, he had never had any patient that required more than over the counter drugs to alleviate the symptoms. He flatly told me that due to my strong libido and functionality I likely would have zero impact in that dept.

    I am still expecting to awake to find this is a dream and my worst treatment nightmares are my reality. Given cancer, the lesion location, the stage, I simply could not have asked for a better treatment option.

    So, just shy of a year after my PSA was found to be concerning to say the least, I start treatment on Sept 9. I have no delusions regarding recurrence as I know all too well how this beast behaves, but I feel that no adjuvant ADT, IGRT radiation best aligns with my treatment and outcome goals. I know this is going to ruffle a few feathers but again, I am not advocating anything other than what is right for me. My uro is totally on board and while he states it certainly is unconventional, the credentials of record of the oncologist whose treatment path I chose are reassuring to both of us. Treatment is always a crap shoot and from my perspective the quality of life is all to often removed from the equation in the all out assault on PCa. I am not one that second guess on hindsight, so I move forward and deal like every man that journeys life with this disease must do.

    I sincerely hope every man facing this journey finds the support and ability to be his own advocate as I have been. Joint decision making has worked extremely well for me but I was never one to expect others to direct my path.

    I will update as more unfolds

    david

  • ninaw moderator
    1 month ago

    @davidt thank you for posting this update! I really appreciate the way you explain your choices in detail. There’s no universal choice for everyone, and I don’t think anyone could accuse you of not thinking through your decision. I completely agree that ideally each person could be their own advocate for the treatment they want, with doctors explaining fully their approaches along the way. I hope it works out as well as possible, with minimal side effects and quick recovery. Looking forward to your updates. – Nina, ProstateCancer.net Team

  • kenneth1955
    2 months ago

    I for one would not have anything done. You have a prostate of 20 cc which is normal and all the doctor can’t find anything. So say no. Done for now. See you in a year. This is your choice

    All the best

  • davidt author
    11 months ago

    Had a 90 minute face to face consultation with my urologist today. I went in with full expectation of refusing to do the 12 core systematic biopsy as I had many studies by leading PCa centers indicating a 12 core systematic biopsy was extremely unlikely to shed ANY new information. He agreed with me and said the MRI images showed NOTHING and it was just 1 of the 2 BPH consistent nodules in the TZ that trigger the PIRADS2 vs a PIRADS1 score. He said the only reason he was suggesting a biopsy was simply consensus within the urology community of appropriate next steps. He did NOT disagree with me on the lack of value of the systemic biopsy and stated that doing nothing other than PSA retesting every 6 weeks or so and another MRI at 6 months would be as valid and I certainly was NOT putting myself at any additional risk by doing so. He quoted and I already knew that there is a roughly 10% chance of intermediate or even advanced PCa despite the lack of MRI evidence. I then brought up the MSK study of how, if possible to improve the transrectal 12 core systematic biopsy to catch 100% of clinically significant cancers. That study came to the conclusion that in the PZ the 12 core systematic was already at saturation of detection but the lack of TZ and anterior cores was missing a significant # of cancers. In normal sized prostates (ie <30ml) they found that just two additional anterior cores using 20mm rather than 17mm core lengths dramatically improved the detection rate and doing 4 such cores pushed the rate to virtual 100%. Of course, getting those cores transrectally is difficult, but it is possible with an end firing, parallel biopsy track probe approach which is how my urologist handles all transrectal biopsies.
    At the end of discussion, I came to the conclusion that the 12 core systematic approach WITH the additional cores as indicated by the MSK study would give ME more peace of mind than doing nothing. It also raises the NPV significantly. Assuming the cores are negative but the PSA remains or trends upward, we will still be doing PSA tests ever 6 weeks and another MRI at 6 months. If any cores come back positive we can then go back to the original MRI and take another look as well as do another MRI at 6 months plus discuss the value of another biopsy. Not the perfect situation, but it feels like a step forward as we gather data. He does feel that the PSA # indicates PCa even though the MRI did not detect any nodules in the PZ and only the 2, BPH consistent nodules, in the TZ and he admits that the biopsy may not find anything, but unless my PSA falls dramatically and consistently to normal levels this is game of waiting for the cancer to reveal itself. What we are NOT going to do is rush to treatment as he agrees we have zero evidence to support ANY treatment discussion, let alone action. Biopsy is scheduled for Dec 13 so maybe we will know more by the end of the year. We did do another PSA blood test today, so that will be another data point in the quest.

  • ninaw moderator
    10 months ago

    @davidt, I’m really glad you brought this information back to the community. It’s clear you’ve done quite a lot of research and act as a team with your urologist – I wish this could be replicated for others. While I don’t have the background to comment on the risks/benefits of the options you discuss, I can completely understand not wanting to sit and wait for the cancer to appear, and this sounds like a fair compromise. I’m glad you got in before the end of the year, so that won’t be hanging over your head during any festivities. I trust you’ll let us know what you discover next week. Thanks again for these details. I’ll be sure to share the link if anyone is weighing a similar situation. – Nina, ProstateCancer.net Team

  • Richard Faust moderator
    11 months ago

    Hi davidt. I’m sorry you are having these diagnostic issues. I’m sure this is beyond frustrating. What you are saying about not wanting the shot in the dark of a biopsy considering how little the 3T mpMRI found is completely understandable. Concerning whether you should go into a watchful waiting mode, for your protection we cannot give medical advice. Of course, know that you are always entitled to a second opinion on what options might be available. Hopefully some others who have had some experience may chime in to offer some insight. Hoping you get some answers soon. Please feel free, if you like, to keep us posted on how you are doing. Best, Richard (ProstateCancer.net Team)

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