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Success stories with advanced prostate cancer and bone Mets?

Would love to hear some ❤️

  1. Hey there! I'd love to point you in the direction of this forum: https://prostatecancer.net/forums/success-stories-with-prostate-cancer. Lot's of community members are talking about success stories there. Talk to you soon! -Samuel, Community Manager

    1. While not yet a success story, maybe the following will bring you some hope that the future does not have to be horrible?

      I find that many oncologists are quick to decide that ADT is absolutely required if PSA begins to rise after the ADT vacation that follows a curative intent treatment (which is typically radiation to the prostate area along with 18-36 months of hormonal drugs combo).

      I have both a Medical Oncologist and a Radio Oncologist. One of them wants me to take ADT for around 9 months, with or without radiation, the other wants me to take radiation and be on ADT for life. Life? Just like that? Regardless of first insuring whether I absolutely require it and that the reward would be greater than the consequence?

      I think that the approach suggested by Dr Mark Scholz from the Prostate Cancer Research Institute seems logical and safe to me. I find it to be methodical and can help going through diagnostic/treatment in sequential order instead of immediately jumping to the worst conclusion.

      I'll take my own situation as an example since it is pretty much what he's discussed in many of his videos.

      A patient with cancer limited to the prostate area and pelvic lymph nodes goes through a treatment with curative intent (Lupron + Abiraterone + radiation in my case).

      Once the curative intent treatment is over, we wait to see if Testosterone comes back and whether the PSA stabilizes after a few months or keeps going up.

      My PSA went up every blood test and was now at 1.07 mid-May. We did a CT scan that showed nothing and a bone scan that showed a single met on the right shoulder blade.

      What Dr. Scholz suggests doing in this situation is that rather than immediately electing to put the patient on ADT for life, perhaps needlessly, perhaps not, is to approach this by a process of elimination.

      Step 1: You only ZAP the lone metastasis that has been discovered without giving ADT right away so that the ADT is not masking other potential areas of tumor growth.

      Step 2: After the radiation, you monitor the PSA closely to see if it is now stable or if it is still rising.

      Step 3a: If the PSA is still rising and a new scan reveals a meta that was missed on the previous scan, then you treat it locally and ZAP it and repeat step 2.

      or

      Step 3b: If the PSA is still rising and a new scan shows nothing new, then you treat it as a systematic issue and you take ADT until it becomes undetectable and then you stay on it two more months for good measure. Then you take a vacation and see if it is stable or rises and act accordingly.

      or

      Step 3c: If the PSA is now stable, then you assume that your initial curative intent treatment got rid of your systematic cancer burden aside of a metastasis that was initially missing during the original treatment because it was too small and away from the pelvic region treated. But now that it has been treated, you have a chance to be fine as your cancer load/burden is gone or small enough that your immune system can deal with it.

      By approaching the issue procedurally like described above, I do not see why we'd be more at risk since all of this can be assessed in a relatively short time.

      In my eyes, I do not see an immediate danger with this approach. And I do see a possible benefit because if you are lucky enough to fall into step 3c, then you won't shorten your life by taking ADT that you might not have needed. You only take ADT because you've confirmed that you need it.



      1. Thanks for your kind words Jill.

        There is something that I like to tell anyone who has been diagnosed with a life threatening disease: While your doctor (hopefully) means well, nobody will ever care more about your health than you because to you it is life or death. Listen to your doctor but do your own research because your doctor might not be as motivated as you or might just not have time to dedicate all of his spare time on research.

      2. great words of advice!! And, so true. Jill, prostatecancer.net team

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