Am I Crazy- PCa Reoccurance

Short story: RP in 2005. Davinci. Gleason 3+3. Some margin issues but captured. PSA slight increase in year 2. Chose watchful waiting with Choline Pet Scan monitoring. Biochemical only, until 3 months ago. Biopsy shows 3+4 nodule at bladder neck, no lymph node detection. Doubling rate 2.5 years, PSA currently 5.2. Second and third treatment opinions call for Salvage Radiation and ADT. So here's the rub- I don't want to partake in either of those treatments - quality of life issues + time and technology. I was one of the first to have robotic surgery in my area - now it's everywhere. I strongly considered watchful waiting in 2005 with my markers - now its the norm. So the conundrum ( as I sit here in great health) take my chances on slow growing cancer, try natural approaches, wait for better treatment options i.e immunotherapy etc. and hope it doesn't jump the borders and metastasize or take boiler plate treatment . Your thoughts please. thank you.

12 Replies

  • PSA of 5 with no prostate is a lot, I feel. First off I would ask if you are comfortable that the imaging is good enough to determine that the only met over 1cm is the one at the neck of the bladder. If so, I would attempt to kill it the best possible way. If they can tag it with florescence, then possibly surgery. Otherwise some kind of high energy treatment - gamma knife? I don't really know what is the least likely to have a negative side effect.

  • Matinqugino,

    thanks for the response. In factoring alternative treatment options for locally recurrent prostate carcinoma, the tumor in bladder neck is 12 mm T2.

  • Ah thanks. So the bladder itself has been compromised. My completely uninformed opinion is that if you removed the tumor completely, then there would be a hold in the bladder. This makes radiation an unlikely option, since the hold would need to be closed up in some manner, and due to a lack of imagination, that means to me only surgery and sewing up the hole. I assume that this is not a technically difficult procedure but only the worry that there are some micro metastases that will defeat any effort at cure. If it were my choice, I would go ahead, provided the surgeon said that the removal of the tumor itself posed no difficulty. Even if the insertion of an artificial sphincter is required, I would do it, although you did not indicate that the sphincter was involved. I don't see what the downside is, and it could easily rest your PSA to zero. In a few years PROSTVAC will be out of trial and the best checkpoint inhibitors will be identified. Possibly the Cuban vaccines will be on the market.

  • spelling!! by "hold" I meant "hole".

  • Where did you get the (C11) choline pet scan? Mayo Clinic?

    You hardly need to ask the rabble here what to do...

    And they can easily tell you if there are any lymph nodes lighting up.

  • Prostatectomy means that they had curative intent - they think they can cure you. Is the lymph node out? You could be as good as it gets. You do need to be careful and follow up. PSA seems to be generally the test being used, but there is talk of abandoning PSA even for diagnosis, to be replaced with imaging. If I were you I would get up to speed on imaging. The very best imaging for detection of metastatic prostate cancer is C11 Mayo clinic. Calm down and do a little reading. Hard to do better than watching the video of Dr Kwon at the 2015 PCRI conference in LA, posted elsewhere, but for your convenience

  • You are NOT crazy.

    But in your situation, with a Gleason of 6 or 7, it's not a very aggressive cancer, but I suggest that you might do very well on ADT.

    Some individuals, if not most, tolerate the hormone therapy very well, with minimal discomfort and side effects. I know of several individuals who have been on ADT for as much as 10 years, and a few even 20 years with success in controlling the cancer with no additional growth or metastases.

    ADT isn't always so bad---I was on it for four years, but I had advanced metastatic PCa and it was too aggressive and too advanced.

    And ADT can buy you lots of time until a better treatment comes along. And if you were to select ADT, I suggest not getting the three-month injections of Lupron, and the one-month can leave you with an option to discontinue the ADT or switch to another treatment. You have two positive things in your favor; a not-to-aggressive cancer and also the fact that you don't have metastases. It's far easier to control your cancer at this point with ADT, and it would take you a long time for it to become really dangerous.

    My own Gleason is 8, and my beginning PSA was 744---and I managed to last four years with ADT controlling this aggressive and advanced cancer---I have very extensive pelvic lymph metastases, and finally had to go into hospice at home care.

    I just offer this info for comparison, and compared to me, you're almost in perfect health..........

    So the very best of luck to you, and please don't worry too much, you have many options open, and you're in no immediate danger now or in the near future.

    CERICWIN (Eric)

  • Yes I agree (that 3+3 could be managed with waiting and) that ADT can resolve some mets in a quite surprising way, so long as the cancer is not so heterogenous as to have a significant fraction of V7 splice variants (for example). In this case, the cancer has moved out of the capsule, so I think concern is warranted - it has shown its fangs. Just not sure what size they are, but usually [citation needed] its not good.

  • HI: Quality of life issues with Radiation and ADT? I have had RP and both of the others six years ago and, other than ED, I have had no significant quality of life issues.

  • Are you on ADT now?

    Or do you mean that your testosterone level has still not recovered to 350?

  • Ultimately you have to choose the path that you are most comfortable with and that will give you peace. speak with your family and seek the counsel of someone you trust on your decision. No choice in treatment is a guarantee that the cancer will be eliminated. Fight it as hard as you can, do your research and make a decision. Blessings to you.

  • I had a radical prostatectomy and they found that the cancer had broken the capsule - nasty removal of surgical clips because they had to be left in weeks longer than usual because the 'join' wasn't satisfactory ... the clips got overgrown and then were 'ripped out'! - and had Gleason 7-8. Followed with Zoladex, on my absolute request ... that's before it became best practice thanks to me, and then radiation of the prostate bed and then onto intermittent Lucrin when the PSA began to rise. Now on 'end-on' Lucrin.

    Now for the point I want you to act on - I had a Gallium 8 nuclear scan ... the latest and the best ... which has a pinpoint resolution down to 2 (Yes, that's two) microns. The scan shows up the cancer in the wall of the cell - totally remarkable. Seek out the Gallium 8 scan - they're rare because they are the leading edge - and after you and you're specialists ... that's at least, a Radio Oncologist and a Medical Oncologist besides your Urologist then choose your options for treatment.

    Cheers, Aussiedad

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