pauldhodson Posted November 2, 2018 Share Posted November 2, 2018 Hi Guys, my latest meeting with my MO has revealed that my prostate cancer tissue from my prostate, taken during a TURP, has come back 90% small cell and 10% sarcomatoid. Just wondering if anyone else has faced this. I'm currently on a combination of SBRT (cyberknife) radiation with 4 cycles of cisplatin+etoposide chemotherapy. Cheers Paul. Link to comment Share on other sites More sharing options...
alanbarlee Posted November 2, 2018 Share Posted November 2, 2018 G'day Paul, From what I've read, small cell (neuroendocrine) cancer is both rare and aggressive, and justifies the equally aggressive regime that you and your docs are throwing at it - targeted high energy radiation and platin-based chemotherapy. You do seem to be in very good hands. My only suggestion is to take particular care of your feet, fingers and mouth, by minimising blood flow to those areas through the use of ice during hopefully slow chemo infusions - peripheral neuropathy and dry mouth can be significant side effects of platin therapy. You might also want to chat with your medicos about the appropriateness of aerobic exercise immediately after each infusion - again with the objective of minimising local concentrations of the chemicals. I'm aware of some centres having an exercise bike in the clinic for that purpose. Cyberknife is state of the art equipment for precisely delivering high energy stereotactic radiation to where it needs to go. Your docs might also chat with you about pelvic IMRT (e.g.to pick up any affected pelvic lymph nodes that may (or may not) show up on a sensitive scan like 68-gallium-PSMA. Best wishes Paul - you'll have a lot of supporters in our Group willing your cancer to succumb to to the bombarding that you're subjecting it to! Alan Link to comment Share on other sites More sharing options...
pauldhodson Posted November 2, 2018 Author Share Posted November 2, 2018 Thanks for your comments Alan. Today I finished day 3 of round 4 of my chemo and other than some mild nausea, I've had no major issues. Thanks for the suggestion about IMRT, I'll look into that. Link to comment Share on other sites More sharing options...
ardee Posted November 2, 2018 Share Posted November 2, 2018 Some thoughts, Paul ... Treating neuroendocrine tumors (NET) is a different science to treating adenocarcinoma prostate cancer! As Alan mentioned, your medical team is taking the right steps, but there may be more you can do by advocating for yourself. Here are suggestions to learn more and pursue .... Find an Oz based NET community ASAP .... in the US at least, there are NET groups across the country; check out the Unicorn Foundation. They will keep you apprised of the new science. What is true for one type pf NET tumor is often true for another ..... on the Inspire site there are forums for lung, pancreatic & GI NET cancers. There is some talk about precision medicines and immunotherapy treatments being used - checkpoint inhibitors may work; see this article. Speak to your medical team about somatically sequencing your tumor - getting a genomic analysis. This will help determine whether you are a candidate for advanced meds like Keytruda (pembrolizumab). In Oz, the key will be whether these very expensive drugs are approved for NET tumors NOT for prostate cancer. If unavailable through the system, access may be available directly though the pharma o or an organization like Unicorn can direct you. There are additional steps you can take with this diagnosis BUT as mentioned .... you have to be very active on your own behalf. Onward & upwards, rick rd@ancan.org Link to comment Share on other sites More sharing options...
pauldhodson Posted November 5, 2018 Author Share Posted November 5, 2018 Thanks Rick, I'll look into that. I've been in hospital the past few days as I developed a UTI which spread to my kidneys. Cheers Paul. Link to comment Share on other sites More sharing options...
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