Haven't posted in a while, but here's a quick update (My Bio has the full details from diagnosis to present.).
After recovering from RALP in mid February I had my PSA checked in late May. PSA was 8.11 which led to my Urology Oncologist (UO) starting me on Casodex & Eligard, and ordering a GA-68 PSMA-PET scan which was done in mid June (2 weeks after starting ADT). Scan results revealed an 11m soft tissue nodule in the posterolateral left pelvis and a similar appearing 7mm nodule on the right side. No other hot spots were identified. Based on those results and a discussion with my UO & RO I decided on IMRT to attack the 2 tumors and treat the prostate bed for possible micro-mets. On July 28th I had another PSA Test & added a Testosterone test. PSA was 0.01 and T was 11.
In Mid August I started 38 sessions of IMRT. Received 45 Gy to the pelvis, 5625 simultaneous boost to suspicious adenopathy and prostate bed boosted 2340 to 68.4 Gy . I completed my last session on October 7th. I think the hardest part of the IMRT was bladder management. I had to have at least 50% of my bladder full prior to each IMRT session and the session lasted about 29 minutes. I tell you what, I couldn't get to the bathroom quick enough to pee before I wet myself.
Yesterday (11/4/2022) I had another PSA test done. My PSA is still at 0.01 ng/mL. I was scheduled to meet with my RO on November 10th but that appointment has been postponed. Now I will meet with my RO and UO on December 7th 2022. I'll have a PSA and T test done a few days before my December appointment to see where things stand.
When I was first diagnosed in December 2021, my UO let me know I had a high risk/aggressive prostate cancer and that I was looking at RALP, IMRT, and ADT to try and manage it. So far everything has been proceeding as we initially discussed, and for now, I'll consider this a win.
I think the key to living with Prostate cancer is don't let it take over your life. Sure you'll have some ups and downs and lots of Dr. Appointments, but don't be "That Guy Who Has Prostate Cancer!" Just be positive, Trust that God is sovereign, and live life to its fullest making new memories every day. Good Luck to all of you fighting this and my prayers go out you and your families!
GMan-62
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GMan-62
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What a pleasant surprise? First and foremost, um glad that you made out okay. My son completed his Radiotherapy shortly after you did. He did okay. No SEs. I have come to realize that one must always be vigilant even after treatment for PCa. For example, my PSA has been <0.01 for 13 years after RP in 2009. I took a uPSA test about a week ago and it was 0.014. Not worried, but I am going to retest. Please take care of yourself.
Good to hear all went well for your son. I'm sure that was quite a challenge for him as well. Especially when you have to go and they aren't ready for you yet. Then you have to wait and hold for what seems an eternity. The only SE I seem to be experiencing is every now and then I leak a bit and if I cough to hard without thinking about tightening the Kegels I leak as well. Not too bad though. The thing I hate the most is those darn hot flashes, and I find I have more at night while trying to sleep than during the day.
It is encouraging for me to hear your PSA remained at .01 for 13 years and just now is starting to rise a very little bit. I pray that God sees it fit to keep me around for a while. I have 5 grandchildren and I'd love to be here to watch them get married and start families.
Keep an eye on your PSA and I will continue to pray for you, your son, and your family.
I have read the STAMPEDE study and I plan to discuss when I meet with the Dr. next month. If I'm not mistaken, I think Tall Allen reported that in late September the SOC was changed to include Abiratrone with ADT and potentially IMRT based on the study. If I am mistaken I apologize. My memory isn't what it used to be anymore.
I believe you are correct, GMan. You had the appropriate IMRT and appears a good response. Short term 18-24 months of ADT plus abiraterone (or other AAR drug) is indicated to support death and clearance of the irradiated cancer, rather than some recovering.
This is in reply to an email you sent me regarding Casodex. My husband was on Casodex 50 mg for 60 days this past February and March. His PSA dropped from 10.46 to .955. Then he went on to receive radiation and is still in the process of receiving Lupron shots every 3 months. He did not experience any side effects from the Casodex that I can recall. He is stage 3b and this is his initial experience with treatment for this cancer. I know this is not considered advance prostate cancer, but I hope this info helps. I don't like to not reply to anyone who emails me with inquiries. So, apologies to anyone who feels I should not be on this site. God is always with you, GMan-62, and my prayers are too.
I’m sorry if mentioning God is so offensive to you. I don’t want to turn this into an argument or debate as that is not what this site is for, but I can’t leave God out because He is everything in my life, and He is my strength to handle this. I’m not forcing my beliefs nor am I telling people to include or leave God out of their battle with prostate cancer. I’m just trying to encourage others who are in the same situation.
Look. We are all in a tough spot and rooting for one another. And, if God is important in your life- that’s fine. If you believe God is always with YOU. that’s fine too. But- I don’t think it appropriate to say to strangers that God is with them. If God was with me, then why do I have PC? And- did God permit the Holocaust and so many other mass atrocities? I am not looking for you to answer those questions not have a debate with you- I just think it’s best to leave God out of the conversation.
Looking at your Bio, your Dx is very similar to mine. Next step for me is probably adding Abiraterone to Eligard for the next 24 months. Good luck to you, and may the Lord bless you.
I'm sorry to hear you only had 9 months BCR. I just read an article on the STAMPEDE Phase 3 study and by adding the Abiraterone 82% of the participants went 6 years with met free survival. Another one of the men on this site went 13 years with a PSA of 0.01. It just recently rose. I guess it just goes to show that even with all of the same symptoms and Dx results, the cancer acts and reacts to treatment differently in each and every one of us. That’s why I’m planning on discussing adding the Abiraterone to my treatment with my oncologist next month.
I will continue to pray that your cancer stays remission and your PSA remains undetectable.
Well- of course someone else had to chime in. What good is it doing me (or you) if God is always with me? What good does it do foe baies killed in plane crashes, car crashes or those who die at very young ages due to illness, disease, infection....What about innocent victims of gun violence and war. I could go on and on and on. What "free choice" decisions did they make that caused there untimely deaths. Of course, I know your answer- "only God knows" and "we must keep the faith". Give me a break. And- while you're at it, keep God off of this site.
As I said earlier, I don’t want this post to turn into an argument or debate.
I have a few followers who are believers and I am sharing what I’m going through and how I deal with it as a believer. You chose to read my post and have the right to agree or disagree with what I have to say. And, if you don’t agree with what I have to say you have the right not to read any more of my posts since they are so offensive to you. But, you don’t have the right to read my post, tell me what I can or can’t say in it, and then turn it into a post about why you don’t believe in God.
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