What's next?

Hello: I'm a new poster seeking information. In summation, I was diagnosed in February 2011 with a PSA of 6. Had a prostatectomy in April 2011 (Gleason 3+4). PSA was non-detectable until December 2014 when it went up to .4. Did salvage radiation in February 2015 and my PSA was very low until February 2016 when it went to 1. Now in June 2016 it went to 16 and with a repeat test two weeks later it was 18. I have a follow up visit with my urologist scheduled the end of this month and I found someone with which I intend to seek another opinion.

So with the above noted issues, what are your comments/suggestions/questions I should ask, etc.???

Thank you!

16 Replies

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  • Obviously, there is something going on, and you will need to have some scans done to see if and where there are metastases. But nothing can be done until the extent and location of the metastases has been determined.

    I would ask about starting hormone therapy immediately after the scan results, or immunotherapy, or even chemo. Or a combination of hormone and chemo can be very effective.

    But please don't regret having the prostatectomy, even if it failed to eradicate your prostate cancer. Having the prostate removed has prevented it from sending out even more cancerous cells, and it appears that most likely some cancer had escaped before your prostatectomy, but with a Gleason 7, it's been slow in devloping, I think, as it isn't considered really aggressive until it's a Gleason 8 (which I am).

    There are quite a few treatments nowadays, and it's impossible to really determine which is the exact one that will work best for you---everyone reacts differently to treatments.

    You can only do your homework, look into the ramifications of the various treatments available, and make a choice, working with your doctors.

    You have my best wishes for a good outcome, it's so stressful to have a rising PSA and not know what's going on.

    The very best of luck to you,

    CERICWIN

  • Thank you! But I neglected to state that I had a CT and bone scan this week; both of which were negative.

  • Well, that's very good news, and makes it more puzzling as to what is going on. A PSA at that level would usually indicate a metastasis which would be more easily detected.

    Perhaps you need a PET scan, which is a much more definitive scan, and you can ask your doctor about it. I think that it might be possible to have micro-metastases that the usual scans fail to detect.

    Are you on a testosterone supplement, or some medication or supplement which could give a false PSA reading? If you're taking something that might be out of the ordinary, an unusual dietary supplement, it may be giving an entirely false reading, in which case you're doing very well.

    And, in any event, you do not appear to have any large, threatening metastasis, so you can breathe a little easier for now. But I think that any doctor would agree that additional testing is indicated.

    PSA's aren't entirely accurate, and are only a rough guideline as to what is going on with prostate cancer. Perhaps you'll be very lucky and you don't have any cancer, which is what I hope is your case.

    CERICWIN

  • Thank you for your thoughtful responses. They are very helpful!

  • Get an Oncologist and put urologist in second place.

  • Casodex and Provenge might be good for your situation. Try and not panic because you've got a good long time (years) and hopefully they'll come up with something new. Good scans are very important and your have them.

  • Definitely, you need an onc on your team moving forward. An RP and zero PSA postop usually indicates that your prostate is no longer in the picture. I'm interested to know what they found to put you in salvage radiation after your PSA went up. What did they irradiate? And why ADT wasn't considered? The length of time for your PSA to rise and a 3+4 G indicates a non-aggressive grade of PCa. Your negative scans didn't show any detectable mass. I believe you have time to have this analyzed and diagnosed for a more lasting treatment. You can take a deep breath that this puts you in a group or class with promising treatment success. What I would add to what you have done so far is an MRI with endorectal coil (w/ and w/o contrast) that could detect suspicious inflammation in your abdomen area. I hope you live in an area where there is a radiologist trained to read this type of scan. Of course, only a biopsy of the suspected area would positively tell you if mPCa. That would help you and your doctors come up with a treatment plan.

    What was very low PSA (was it undetectable?). Altho, this is all unique to each patient, docs are guided by 0.2 PSA after initial treatment as needing more treatment. In your case, they stopped after very low reading.

    I wish you best and it's comforting to know your stats seems to belong to a class of treatable PCa.

  • What does your rad-onc say?

    Unfortunately, the standard protocol after failed RP is SRT to the prostate bed even though they have no clue other than statistics that that is where the residual disease is. They are so often wrong that there is now a cottage industry for SSRT - Tx for failed SRT. Most urologists, rad-oncs, and even med-oncs are still stuck in the old way of thinking and do not take advantage of the latest in scan technology. Get a Carbon 11 Acetate (Almeida) or choline (Mayo) PET and find out where it is. If there are only a few mets you can consider focal radiation just to them.

    In the meantime IMO you need to do something to stanch what may be a mutation to a more aggressive strain. I.e. ADT.

    Bill/Memphis

  • Hi

    Sorry to hear about the big Psa jump. It is not good news and although your scans were negative a jump of that magnatude is most likely indicative of systemic disease with micrometastes. These are too small to be seen with standard scans. C-11 molecular scans like C-11 Acetate or Choline may be better. Also look into a Soduim Fluoride (NA-18 F) PET / CT bone scan. Do an internet search of these terms to learn more about them.

    I also agree that you should be under the care of a medical oncologist who specializes in prostate cancer. I suggest that if possible you find a major cancer center that specializes in prostate cancer for a comprehensive consultation and second opinion.

    You need to be proactive at this stage of your disease and search out and explore all of your potential options including clinical trials and genetic testing. Do not just accept the next step without understanding all you options.

    The most likely next step will be to castrate you with the use of a chemical agent. This is called androgen deprivation therapy (ADT).

    Lastly do not rely too much on the opinions you get on sites like this one. Most of the respondents are not medically trained and are voicing their opinions. You need solid medical advice taken in context of what is best for you.

    Good Luck

    Bill Manning

  • Be aware that if Medicare is your primary health insurer they DO NOT cover 18f NAF (sodium fluoride) PET/CT imaging. All the advice regarding moving to a Medical Oncologist is on target. The Urologist has performed his surgical removal, the Radiation Oncologist has performed is radiation, so both of these physicians have completed the form of treatment iin which they specialize and both have subsequently failed. The Medical Oncologist is now the specialist of recurring disease following the earlier failures and will direct imaging to identify location of continuing cancer cell development, identify if any trials are available locally or nearby (good idea to ask if any trials are available), and/or prescribe appropriate medications to rein in continuing development with, most likely, androgen (testosterone) deprivation medications to remove this source of fuel necessary for cancer cell growth,

  • See theprostateadvocate.com/obs...

    It has been my primary guide through my journey (similar to yours).

    After my recurrence. I have been on ADT for almost five years with a PSA of 0.015.

    Good Luck, Clint

  • Without any more details I would simply say that if you have been diagnosed with prostate cancer I would find an oncologist who specializes in prostate cancer.

  • Please do NOT rush for any more invasive treatments, medications or radiation! I would strongly recommend seeking at least 2-3 opinions from the top specialists in the Country who will ,have no interest an any subsequent care /procedures, i.e., totally un-biased opinions!

    One of the best sites for this is w/o having to travel is :

    www. secondopinionexpert.com/us

  • Hi,

    I would have thought you would have been put on a hormone regime which literally blocks your testosterone. Testosterone as one old time physician told me - we all have rogue cells which can turn cancerous and testosterone is like throwing benzene on a fire ... The physician is showing his age because benzene use is now Anne's because of it's carcinogenic properties ...

    The normal treatment at your stage. Is something like Lucrin (here in Australia it's called Lucrin) ... The USA name is similar Lupron? ... But it's exactly the same. It apes female hormones and literally wipes out your testosterone. Incidentally, testosterone is made principally by the testes but there is some made in the Pancreas.

    It would knock you PSA readings way down ... Normally a three monthly injection and when you PSA drops to insignificant it's stopped for a while which helps reduce resistance whereby it doesn't work effectively. When your PSA begins to rise you get another dose. They used to give it none stop but resistance crept in besides the side effects are atrocious - look them up.

    If you PSA is rising so rapidly you should have been treated ... Ditch that doc and get another.

    Cheers, Aussiedad

  • Aussiedad, the Pancreas does not produce testosterone. Rather, other than the primary testosterone production source, the testicles, the Adrenal Glands are the secondary organ that produces testosterone. And not known to many, the cancer cells themselves can produce testosterone via a cholesterol process. These three sources further explained in this paper:

    cancer.gov/types/prostate/p...

  • I would want to get a bone and CT scan or MRI to determine if the cancer has spread.

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