Sean Posted November 16, 2017 Share Posted November 16, 2017 Hello All 1 year ago today i had a PSA test that came back at 19. I had no idea what this meant. At 54yrs old, PC was the last thing on my mind. I had a Trus biopsy of prostate which came back with suspicious cells but not defined. I then had a CT Scan in Jan that showed PC in more than half of my prostate. I then had a Transperineal prostate biopsy and i was told result was Gleason 9. I then had a Pet scan that showed PC was in lymph nodes. I had no idea what all this meant. Was told i had to have a RP, but i was also refereed to radiation oncologist. Was told i was a candidate for High Dose Brachytherapy followed by 6 weeks of External beam radiation therapy. I seeked 2 more opinions from 2 other Urologists and both advised that either option had the same success rate. I choose radiation treatment. I started on ADT in Feb and had HD Brachytherapy on 11Sep. I have just finished the EBRT. Now its a wait and see situation. My life have changed so much. The side effects from ADT are awful. I have done everything the experts have told me to do but the side effects persist. I will be on ADT for another 2 years. I was invited to be part of a Deakin University research on exercise and supplements for ADT side effects. I accepted and was seen by team last Sunday where they did 4 hrs of test's . Anyhow that's my story so far Cheers Sean Link to comment Share on other sites More sharing options...
Cam Posted November 16, 2017 Share Posted November 16, 2017 Hi Sean, my roller coaster PCa ride has done my head in too, but I don't have the stamina to type out all that has happened to me since I was diagnosed as a 43 yo in late Jan this year and now have stage IV PCa. Happy to chat any time 0409 861 754. Cam Link to comment Share on other sites More sharing options...
alanbarlee Posted November 16, 2017 Share Posted November 16, 2017 Hi Sean (and Cam), You've presented a very clear and concise account of your prostate cancer journey so far. The only missing item is your latest pretreatment PSA, 6 months and a year on from your first one, from which you can calculate the PSA doubling time - an important piece of the jig-saw. The PET/CT scan identifies not only enlarges structures like lymph nodes, but also whether there is unexpected metabolism happening inside them. You should know that an even more sensitive new scan uses 68-gallium-PSMA, and that this scan is now fairly widely available in the larger population centres. Your relatively young age, the Gleason 9 biopsy, extensive bilateral gland involvement and lymph node metastasis puts you in the advanced / high risk camp (Stage 4), along with many of us in the Group. I would therefore expect that immediate and aggressive treatment would be offered by most oncologists dealing with cases like yours, and that's precisely what you have had / are getting. The brachytherapy (high dose radioactive seeds) targeted the cancer in the gland, and was supported by EBRT (or IMRT) to hit the seminal vesicles and pelvic / lower abdominal lymph nodes and other local sites. The systemic androgen deprivation therapy (ADT) is aimed at nailing any escapees that may have migrated elsewhere (e.g.to bone) by cutting off their supply of testosterone. There are a few things you can consider adding to the excellent Deakin exercise program. One is to exercise daily, combining resistance and aerobic training if you can. The second is to limit your dietary carb intake, which might slow down PCa growth, but which will help to limit hot flushes and night sweats, especially if you avoid them during the evening. Breathable clothing and a fan also help a lot. With diet, it's probably good to give red meat and most dairy a miss, since there's some evidence that they promote PCa growth. A heart-healthy mediterranean diet is a good starting point. If side effects are really bad (and you haven't specified what they are), you could discuss with your oncologist trying a switch in the GHRH agonist your using (e.g. from Lucrin to Zoladex, or to degaralix, which works slightly differently). A possible addition to the palette is a 5-alpha reductase inhibitor (e.g.dutasteride / Avodart), which reduces the enzymic reduction of testosterone to the fuel that PCa really likes - dihydrotestosterone (DHT). Not all oncologists are open to this (mine is), but you might want to raise it with yours. Another important topic for an oncologist discussion is to consider an early start on chemotherapy (docetaxel / Taxotere) - at the start of ADT treatment , rather than waiting for 'castrate resistance' to develop, when your regular PSA tracking eventually fails to respond to lowered testosterone. This approach was announced to the PCa world a couple of years ago on the basis of spectacular trial results, and is rapidly becoming standard of care in cases like yours. Most men (especially younger ones) manage the side effects quite well - but you'll want to discuss that with a medical oncologist. Beyond that there are some excellent new second-line ADT treatments - abiraterone (Zytiga) and enzalutamide (Xtandi) being the most widely prescribed. They each work in a different way, and both are used in conjunction with standard ADT - generally post-chemo at this stage unless you find you can't tolerate the docetaxel, in which case your oncologist may be able to prescribe one of these earlier. There is also an imminent Australian trial coming out of Peter Mac on a new systemic radiopharmaceutical, 199-lutetium-PSMA. You would need to test positive for PSMA (a membrane antigen), and you would get either that treatment or cabazitaxel - a relatively newer chemo drug. It would be good to check this option out with your radio-oncologist, who among other things would need to consider your total radiation load. Depending on specialised genetic testing, if you have one of a number of abnormal genes like BRCA-1 or 2 (also found in some breast cancers), there is a class of targeted therapies called PARP inhibitors (e.g. olaparib), which might form part of your broadside at some point. You could ask your oncologist about the appropriate timing of the tests. That's about all I can think of - but you'll see from the above that you have many proven options from which to weave a longer term treatment strategy with your doctors. Patient empowerment comes from getting educated about your pathology and scan reports (including routinely getting your own copies), as well as plugging in to reliable groups and websites that can begin to update you on current monitoring and treatment options. The objective is not to show your docs how to suck eggs, but rather, to develop a mutually respectful, patient-centred relationship. Most (but not all) doctors will react well to you having put some effort into understanding your disease, and wanting to develop a long term team relationship with them. Keep us in the loop! Best wishes, Alan (Barlee) Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted November 16, 2017 Share Posted November 16, 2017 Alan (Barlee) saved me having to provide a similar explanation of methods of treatment available, recommended, or on the horizon. When you see words he provided liked "olaparib" "PARP inhibitors" "BRCA1 or BRCA2 genes" "PSMA" you can enter these into the internet search box and hopefully get a better understanding what they mean. If you have a great Medical Oncologist he may take the time to explain them to you if he has time. Androgen deprivation medications like Zytiga/abiraterone acetate and Xtandi/enzalutamide are explained here: http://www.theprostateadvocate.com/pdf/Zytiga or Xtandi What is the Difference.pdf Early chemo: http://www.theprostateadvocate.com/pdf/ADT PLUS CHEMOTHERAPY FOR PATIENTS INITIALLY DIAGNOSED WITH METASTASES.pdf ADT Side Effects: http://www.theprostateadvocate.com/pdf/ADT Side Effects.pdf Link to comment Share on other sites More sharing options...
Bruce Kynaston Posted November 16, 2017 Share Posted November 16, 2017 Sean, Alan has given a very good supportive response so I can't improve on that. As a retired radiation oncologist and fellow member of this Group, I can only say that it seems that you have very good medical advisers. Sorry about the side effects of the ADT but that therapy is necessary, as you know. This is a wonderful Support Group that Jim has set up and manages, and I recommend the monthly teleconferences. Best wishes, Bruce. Link to comment Share on other sites More sharing options...
Sean Posted November 17, 2017 Author Share Posted November 17, 2017 Thank you Alan,Charles & Bruce for your contribution and advice. I had High dose Brachytherapy not Seeds The team at The Alfred Hospital Radiation Oncology have been 5 star. i Finished 28 sessions of IMRT 2 weeks ago and apart from some lethargy and wanting to P every 20Mins i am doing ok Cheers Sean Link to comment Share on other sites More sharing options...
Sean Posted February 17, 2018 Author Share Posted February 17, 2018 Hello All 4 months have passed since high dose brachytherapy and 3 months since last EBRT session. Had first Psa test and Prof Millar at Alfred hosp advised me yesterday that psa is undetectable. I wont change thing i am currently doing. Exercise daily, eat fermented foods, intermittent fasting ,keep on boosting my immune system through healthy gut foods Cheers Sean Link to comment Share on other sites More sharing options...
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