Ready to throw in the towel

The thing the therapist has helped me see the most is that setting expectations and being in the moment greatly affects how I feel about the outcome.

For example, I was until very recently anorgasmic from Orgovyx. Going into a sexual encounter knowing this made me feel sad and anxious and not wanting to even do it at all. However, approaching it from the angle of "I'm going to enjoy the physicality and emotions of this experience as it's happening and see where it leads instead of thinking about how it's going to end" has helped a lot.

Another example: pre-Orgovyx I walked my dog four miles in an hour. Post-Orgovyx that same walk took about an hour and 15 minutes. I'd been thinking "this sucks, my walk is taking me 15 minutes longer than before" and I would look at the reports from my watch showing me slowing down. Now I go into it thinking "It's nice to be outdoors and my dog is really happy jumping in all the leaf piles and it's fun watching her. I'm lucky I get to do this."

Just this simple reframing has really made a difference. TBH, I initially thought it was just "psychological mumbo-jumbo" but there really is something to it. Not saying this is ALWAYS easy to do but I do make a good faith effort and feel it's helping me.

@scottbeammeup
I got diagnosed in March 2020 at age 58. PSA was around 6.5 at Biopsy. Only one core out of 20 was cancerous. It turned out to be Gleason 9. I Had surgery in June 2020 when PSA was around 9. The path report showed the cancer escaped the prostate. I only had one core, and it is now "uncurbable". I Started Lupron in July, followed by 39 rounds of radiation, which ended in November. I got my third three month Lupron shot in January 2021. My PSA was undetectable in November, so I decided I had enough of Lupron after 3 shots. I was due in April of 2021 for my fourth shot, but I declined. I went vegan, and pretty much stayed undetectable until November 2022 when my PSA showed up at .03. I was .39 in March, and then .62 in July. October I was 4.8 and then in November 2023 I was over 9. I was doing active surveillance, and the doctor felt the need to start treatment soon before it goes into my bones. He felt normally the cancer doesn't go to the bones until PSA is over 50. We did a scan in December 2023, which showed I had many spots that went to my bones even though my PSA was less than 10. It turns out my PSA isn't a great marker to determine the aggressiveness of my cancer. I started Lupron back in December of 2023, then 6 rounds of Chemo and Nubeqa.(Triplet Therapy) I had some decent results but the cancer is still in my bones even though my PSA is undetectable. I now have had 4 Lupron shot and will get my 5th in December.

That is my history but I want to make a few points. I don't know if I cost myself some life by not getting treated in March of 2023, while my PSA was rising. I didn't think it would go to my bones so quickly. However I do not regret going off Lupron in 2021, as my quality of life was pretty much fantastic from April 2021 until December 2023. I pretty much lived like I didn't have cancer for 2 1/2 years. I was still a bit weaker in sports like golf and bowling, but I stilled did pretty well. I feel not many people would have taken the same road, but I am okay with my decision. My low PSA might have thrown me off a bit, and maybe I would have been more aggressive if I knew I shouldn't trust my PSA. Maybe it was a blessing in disguise because of the quality of life I experienced.

Moving forward to 2024 I make sure I experience quality of life even though the treatments can throw some wrenches into living. Even going through chemo from January to May, I managed to take a few trips to Florida and get some golf in . I tried not to let the chemo slow me down too much. I had Chemo on 5/7, and played golf on 5/8, 5/9/ and 5/10. Then the chemo hits me hard after 4 days and I had to take a few days off. Since May I am still living pretty normally, but I do fight the side effects of Lupron and Nubeqa. I get tired faster, I have more aches and pains, I have lost strength, but I still managed to play about 150 rounds of golf this year. The point is I am making the most of my life living with cancer.

I wanted to give you and the board some of my back round. However the real reason for my post is to make sure you are not embarrassed to go to the gym. The guys there probably don't understand what you are going through. We have to make adjustments because of our treatments. For example I moved up and I play the senior tees in golf even though I am only 62. I get some comments from my group, but most of my friends understand and have empathy. I am still able to maintain a handicap from 8-12 depending how I am playing. I try and play tees around 5500 years because I hit it around 170 yards off the tee. At the end of the day I am competitive and still shoot 75 or under around 10 to 15 percent of my rounds. I shoot around 80 most of the time. The point is I made an adjustment and still do the things I enjoy. Point is the fact you still walk 5 miles is fantastic even if it takes you and bit more time. Maybe you can only handle less weight, but you should be proud you still work out. I was able to move up tees to make up for some weakness in golf, but bowling is a bit harder for me, and once in a while I feel bad for myself about bowling. I try not to let that last two long. I was a very competitive bowler who use to bowl many tournaments in the New England area. The problem with bowling is my legs are weak so it is harder to maintain a smooth approach to make good shots. At this point I can't compete with the best amateur bowlers in New England, and I feel that is something cancer has taken from me. I plan to try and get stronger, and get back into more so we will see what happens. I think if I played a bit less golf, and bowled a bit more maybe I can make that happen.

In short make sure you do what you love and don't let other people dictate what you do. Secondly cancer does age us quicker, and does interfere sometimes in what we love to do. Work hard to make that happen as little as possible, but understand it when cancer or treatments get in the way of life once in a while. I am glad you are doing better ,and living your life.

To everyone on this board, whether you have cancer or not, my advice is to always live your life to the fullest. I been a lucky guy as for some reason I always lived my life to the fullest, even at a young age. Why this matters is I have never felt like a victim having cancer. I still feel like a lucky person. I have already lived 10 lives in my lifetime. If my life gets cut short, I will worry about my wife, but I won't feel like I missed out on anything. Good luck and good health to all of you.

Thanks for sharing your story. I was also diagnosed in my 50s, but the cancer had already gone to my bones, and I was rapidly paralysed from the ribs down due to spinal compression

For me, ADT (Firmagon, then Orgovyx) and ARSI (Erleada) were part of my path back to a good quality of life, rather than something that interfered with it. 3½ months staring at a hospital ceiling (missing Christmas with my family) and then over a year of hard physio put hot flushes, sexual dysfunction, fatigue, and mood swings in a different perspective; I'll do anything to keep the mobility I managed to claw back and avoid going back into hospital.

That's probably why my attitude is different — if I'd been feeling good but then put on ADT because of a biopsy result for something I couldn't even feel, I'd probably really resent ADT as well; but having experienced first hand the raw destructive power of cancer once it gets moving through our bodies. if I were a regular praying person, I'd thank the lord for ADT and ARSI on my knees every night before bed.

YMMV

Thanks for sharing your story. I was also diagnosed in my 50s, but the cancer had already gone to my bones, and I was rapidly paralysed from the ribs down due to spinal compression

For me, ADT (Firmagon, then Orgovyx) and ARSI (Erleada) were part of my path back to a good quality of life, rather than something that interfered with it. 3½ months staring at a hospital ceiling (missing Christmas with my family) and then over a year of hard physio put hot flushes, sexual dysfunction, fatigue, and mood swings in a different perspective; I'll do anything to keep the mobility I managed to claw back and avoid going back into hospital.

That's probably why my attitude is different — if I'd been feeling good but then put on ADT because of a biopsy result for something I couldn't even feel, I'd probably really resent ADT as well; but having experienced first hand the raw destructive power of cancer once it gets moving through our bodies. if I were a regular praying person, I'd thank the lord for ADT and ARSI on my knees every night before bed.

YMMV

@northoftheborder
Whenever I read your posts my heart reaches out to you. I wish I had the ability to do more or say something more.

I am not a medical professional nor an expert in anything on MCC. But please know those of us on MCC feel for you. Quite frankly how you can be so upbeat with what you have and are going through.
You are still a young man (I am 77) and I wish you the best in your treatments.

Thanks for sharing your story. I was also diagnosed in my 50s, but the cancer had already gone to my bones, and I was rapidly paralysed from the ribs down due to spinal compression

For me, ADT (Firmagon, then Orgovyx) and ARSI (Erleada) were part of my path back to a good quality of life, rather than something that interfered with it. 3½ months staring at a hospital ceiling (missing Christmas with my family) and then over a year of hard physio put hot flushes, sexual dysfunction, fatigue, and mood swings in a different perspective; I'll do anything to keep the mobility I managed to claw back and avoid going back into hospital.

That's probably why my attitude is different — if I'd been feeling good but then put on ADT because of a biopsy result for something I couldn't even feel, I'd probably really resent ADT as well; but having experienced first hand the raw destructive power of cancer once it gets moving through our bodies. if I were a regular praying person, I'd thank the lord for ADT and ARSI on my knees every night before bed.

YMMV

@scottbeammeup
I got diagnosed in March 2020 at age 58. PSA was around 6.5 at Biopsy. Only one core out of 20 was cancerous. It turned out to be Gleason 9. I Had surgery in June 2020 when PSA was around 9. The path report showed the cancer escaped the prostate. I only had one core, and it is now "uncurbable". I Started Lupron in July, followed by 39 rounds of radiation, which ended in November. I got my third three month Lupron shot in January 2021. My PSA was undetectable in November, so I decided I had enough of Lupron after 3 shots. I was due in April of 2021 for my fourth shot, but I declined. I went vegan, and pretty much stayed undetectable until November 2022 when my PSA showed up at .03. I was .39 in March, and then .62 in July. October I was 4.8 and then in November 2023 I was over 9. I was doing active surveillance, and the doctor felt the need to start treatment soon before it goes into my bones. He felt normally the cancer doesn't go to the bones until PSA is over 50. We did a scan in December 2023, which showed I had many spots that went to my bones even though my PSA was less than 10. It turns out my PSA isn't a great marker to determine the aggressiveness of my cancer. I started Lupron back in December of 2023, then 6 rounds of Chemo and Nubeqa.(Triplet Therapy) I had some decent results but the cancer is still in my bones even though my PSA is undetectable. I now have had 4 Lupron shot and will get my 5th in December.

That is my history but I want to make a few points. I don't know if I cost myself some life by not getting treated in March of 2023, while my PSA was rising. I didn't think it would go to my bones so quickly. However I do not regret going off Lupron in 2021, as my quality of life was pretty much fantastic from April 2021 until December 2023. I pretty much lived like I didn't have cancer for 2 1/2 years. I was still a bit weaker in sports like golf and bowling, but I stilled did pretty well. I feel not many people would have taken the same road, but I am okay with my decision. My low PSA might have thrown me off a bit, and maybe I would have been more aggressive if I knew I shouldn't trust my PSA. Maybe it was a blessing in disguise because of the quality of life I experienced.

Moving forward to 2024 I make sure I experience quality of life even though the treatments can throw some wrenches into living. Even going through chemo from January to May, I managed to take a few trips to Florida and get some golf in . I tried not to let the chemo slow me down too much. I had Chemo on 5/7, and played golf on 5/8, 5/9/ and 5/10. Then the chemo hits me hard after 4 days and I had to take a few days off. Since May I am still living pretty normally, but I do fight the side effects of Lupron and Nubeqa. I get tired faster, I have more aches and pains, I have lost strength, but I still managed to play about 150 rounds of golf this year. The point is I am making the most of my life living with cancer.

I wanted to give you and the board some of my back round. However the real reason for my post is to make sure you are not embarrassed to go to the gym. The guys there probably don't understand what you are going through. We have to make adjustments because of our treatments. For example I moved up and I play the senior tees in golf even though I am only 62. I get some comments from my group, but most of my friends understand and have empathy. I am still able to maintain a handicap from 8-12 depending how I am playing. I try and play tees around 5500 years because I hit it around 170 yards off the tee. At the end of the day I am competitive and still shoot 75 or under around 10 to 15 percent of my rounds. I shoot around 80 most of the time. The point is I made an adjustment and still do the things I enjoy. Point is the fact you still walk 5 miles is fantastic even if it takes you and bit more time. Maybe you can only handle less weight, but you should be proud you still work out. I was able to move up tees to make up for some weakness in golf, but bowling is a bit harder for me, and once in a while I feel bad for myself about bowling. I try not to let that last two long. I was a very competitive bowler who use to bowl many tournaments in the New England area. The problem with bowling is my legs are weak so it is harder to maintain a smooth approach to make good shots. At this point I can't compete with the best amateur bowlers in New England, and I feel that is something cancer has taken from me. I plan to try and get stronger, and get back into more so we will see what happens. I think if I played a bit less golf, and bowled a bit more maybe I can make that happen.

In short make sure you do what you love and don't let other people dictate what you do. Secondly cancer does age us quicker, and does interfere sometimes in what we love to do. Work hard to make that happen as little as possible, but understand it when cancer or treatments get in the way of life once in a while. I am glad you are doing better ,and living your life.

To everyone on this board, whether you have cancer or not, my advice is to always live your life to the fullest. I been a lucky guy as for some reason I always lived my life to the fullest, even at a young age. Why this matters is I have never felt like a victim having cancer. I still feel like a lucky person. I have already lived 10 lives in my lifetime. If my life gets cut short, I will worry about my wife, but I won't feel like I missed out on anything. Good luck and good health to all of you.

I am sending my best wishs to you.

I understand coming off the medication because I am extremely hypogonadal and have been on testosterone for 30 years. When I was told about my PCA my doctor stopped my TRT!
I became a basket case and my quality of life went down the drain.
I was not having it! I found my old TRT clinic and it had a new owner so I went there. the office had moved and it's a trip to get there but well worth it.
Yes I withheld my PSA diagnosis but told my oncologist and urologist about the TRT so they at least knew.
Anyway, 3 years post SBRT my psa is 0.6 and looking good thank God.

Sometimes we just have to weigh the odds and take care of our needs.

Good luck
Glen

@gbear1953 Thank you for the best wishes. I also appreciate your story. What is weird about prostate cancer is young people with a bunch of testosterone don't get prostate cancer. It seems like people lose testosterone as they get older and those are the people who get prostate cancer. Then we treat it by taking testosterone away. It almost feels opposite of what we should be doing. I will read more about BAT therapy for this reason. Stay healthy and thanks for reaching out!