pauldhodson Posted April 5, 2018 Share Posted April 5, 2018 Hey Guys, I was diagnosed with MPCa 2 years ago age 49, I have moved to CRPC a few months ago and I am now on Enzalutamide, plus Zolodex implants every 3 months + Xgeva for bones. I had Docetaxel chemotherapy last year. My PSA is currently at 2.1, so I seem to be responding to Enzalutamide as it was 3.6 before I started that medication. My question is this. I still have my prostate and I have not had any radiation to the prostate or pelvic area. I had cryo-ablation twice in 2016 (focal freezing). Anyway, lately I have been getting lots of pain in my prostate. I'm seeing my Medical Oncologist soon and I may ask for a referral to the Radiation Oncologist for focal radiation for local pain control, but I was wondering has anyone else had serious pain in the prostate and managed it without radiation? Also, my prostate is normal size. I have pretty poor urinary function and I have to pee 3 to 6 times per night and it is hard to get started. The pain ranges from sharp stinging sensations that can last for minutes or hours to a dull ache which gets much worse when I walk or do exercise, especially when it's hot weather. Cheers Paul Link to comment Share on other sites More sharing options...
Patrick Turner Posted April 5, 2018 Share Posted April 5, 2018 Gee, MPca at 49! my sympathies. At 62, in mid 2010, Psa at 6, my urologist found too much cancer to continue operating after opening me up, so I began ADT, then had standard 70grey of EBRT at end of 2010 when PG became much smaller with ADT. Pca continued when I stopped ADT after 2 years, so I went back to ADT and have been on that ever since with monthly jabs in arse muscle. But in 2016 I had an extra 31Grey of EBRT to PG, and that seems to have held it back a bit, but I have many mets, and no on Zytiga as well as normal ADT. But no pain, and probable reason why is that RT tends to kill many nerves. Psa is about 2.7 now. I am fully continent, so the bigger nerves may be quite radiation resistant. But I have 4 get-ups each night. I also take a daily Tamulosin pill which improves the flow hugely, like I was 25 most days, slightly slower at night. Don't be afraid of RT, but its only going to act on the local cancer at PG site or near it, and you think now its the PG, but it could be more complicated than that simple explanation. I'd get a PsMa scan immediately to better know just what your Pca is doing. Its expensive, but worth every cent. It should let docs know just where your Pca is, and maybe find most likely cause of pain, and how best to treat it. I have no clue what would work with drugs for pain because I have not had much pain at all with Pca, although after first 2 weeks of 5 for EBRT 5 times a week, I had burning sensation when I pissed, but that eased right away 2 weeks after final EBRT shot, and I was cycling again at 1 month after, and no pain since. The second lot of 31Grey caused no pain at all. It did mean living in Melbourne for 5 weeks, to get the treatment at Epworth Hospital because it wasn't available in Canberra. Melbourne is good place, fine eateries all over town, and some real nice people. Focused RT is a bit of a vague idea, because even "pencil beam" RT diffuses within tissues as it passes through, like light from a torch, the light spreads, true pencil light beam is like laser light, which does not diffuse. RT is just X-rays, its not beta or gamma radiation which can come from radioactive substances. I'd also be thinking about Lutetium177 systemic radiation, if they let you have it, because local pain is one thing, but just what the cancer is generally doing is another. Meanwhile, try to look after yourself, and for me, I know that isn't always easy. Patrick Turner. Link to comment Share on other sites More sharing options...
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