Ready to throw in the towel

Posted by scottbeammeup @scottbeammeup, Jul 19 6:50am

I'm 60 and was diagnosed as Gleason 7, T2B. Was given Lupron, 5 sessions of SBRT and they want me to continue Lupron for a year. I just got my second six month shot.

I honestly don't think I can make it. I worked REALLY hard to stay in shape but now my arms and legs are like toothpicks and my stomach is huge. I've forced myself on a 500 calorie a day diet (two protein shakes and a multivitamin) for the past month and it's STILL not getting rid of my belly. I stopped going to the gym because, frankly, I'm embarrassed to be seen there among my old gym buddies.

I had a fantastic sex life with a good number of f***buddies but now it takes so long to get an erection by myself that it's not even worth it.

Worse, though, is that I am SO sad with a grief I have never felt in my life before--not even when my parents died. I feel like I am underwater looking up at a hazy world. I cry or feel sad at least 4-5 hours a day.

I sleep, at most, four hours a night even though I take a double dose of Xanax (2 mg total) and two Benadryls. The drugs knock me out but I wake up at 2 or 3 AM and can't go back to sleep.

Today, I casually told a nurse I can't wait for the next six months to be over because that's the end of Lupron and she said it's going to be more like 18 months to get back to normal because Lupron takes a very long time to leave the body. Hearing that made me want to hurl myself off the roof of the medical building--I just literally froze with fear.

I'm technically "alive" but there is no quality to anything. My day consists of faking my way through work, then coming home and crying on the couch and staring into space. Sometimes my heart will start racing at 150-180 bpm for a few minutes and I pray I will just have a heart attack and die.

My friends and family have given up on me, and I honestly don't blame them. I also got tired of their "you need to be positive," "you need to have a positive outlook" bull****.

I guess what I'm asking is how the hell do so many other guys do this and still have any kind of a life. I feel like I'm 100% destroyed inside.

UPDATE: Nov. 15, 2024

To everyone responding to this post--thank you! I will say it is an older post and I have gotten help in many ways:

I joined a support group, I have a prostate cancer mentor, I am seeing a psychologist and a sexual health physician, and of course still participating in this group. One "advantage" of getting a prostate cancer diagnosis early in the year is that I was able to quickly meet my insurance deductible so don't have any out of pocket cost for these things until January so plan to take FULL advantage of any and everything available to me through my cancer center.

I have also been exercising a lot and outdoors as much as possible. I find being in nature is helpful. I also listen to a lot of sad music which is oddly cathartic and have been writing about my life which helps me to channel a lot of feelings and ideas into things that might somehow help others.

So, while the original post was negative and is true to how I felt at the time, my outlook is improving. I'm still not quite the cheerful carefree guy I was before but I'm also not crying three hours a day anymore, either. So, progress is being made and thank you to all who are responding.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@mrlucky200abc

@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!

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"What is weird about prostate cancer is young people with a bunch of testosterone don't get prostate cancer."

I understand the confusion, but it make sense when you think about it. Testosterone doesn't cause prostate cancer; it's just once you have prostate cancer, the cells feed on it.

As we get older and our cells keep dividing, we have more and more chance for mutations to slip in, and sometimes those mutations are cancerous. For some reason, cancerous mutations are especially common in breasts and ovaries for women, and in the prostate and testes for men.

Starving the prostate cancer cells of testosterone can slow them down or stop them completely. We're very lucky there: people with most other types of serious cancer don't have access to such a (relatively) simple treatment option.

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@northoftheborder

"What is weird about prostate cancer is young people with a bunch of testosterone don't get prostate cancer."

I understand the confusion, but it make sense when you think about it. Testosterone doesn't cause prostate cancer; it's just once you have prostate cancer, the cells feed on it.

As we get older and our cells keep dividing, we have more and more chance for mutations to slip in, and sometimes those mutations are cancerous. For some reason, cancerous mutations are especially common in breasts and ovaries for women, and in the prostate and testes for men.

Starving the prostate cancer cells of testosterone can slow them down or stop them completely. We're very lucky there: people with most other types of serious cancer don't have access to such a (relatively) simple treatment option.

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I agree @northoftheborder. That is why I get my Lupron shots and take Darolutamide daily. I am hoping it slows progression enough and Maybe with AI they find a cure for this disease.

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@mrlucky200abc

@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.

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I urge you not yo beat yourself up over delaying treatment due to your low PSA score.
I met a man in my surgeon’s office who had Gleason 10 - aggressive type to boot. His Presurgical PSA was 1….that’s ONE.
Only reason he found it was because he had just watched his best friend die from PCa and was terrified. He literally forced his urologist to do a biopsy and the Dr was totally stunned by the results.
For some reason they are finding a variant of this disease that expresses very low PSA and you might be one of those men who have it. Probably too late but genetic testing might reveal the true nature of your particular cancer.
Best

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@heavyphil

I urge you not yo beat yourself up over delaying treatment due to your low PSA score.
I met a man in my surgeon’s office who had Gleason 10 - aggressive type to boot. His Presurgical PSA was 1….that’s ONE.
Only reason he found it was because he had just watched his best friend die from PCa and was terrified. He literally forced his urologist to do a biopsy and the Dr was totally stunned by the results.
For some reason they are finding a variant of this disease that expresses very low PSA and you might be one of those men who have it. Probably too late but genetic testing might reveal the true nature of your particular cancer.
Best

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Yes, my oncologist (at the time) told me that about 1/20 cases of prostate cancer hit young and develop very fast. They're more common among men of African or Caribbean ancestry (which is why they need to start PSA screening younger, in their mid 40s), but that doesn't apply to me, and I still got hit with the aggressive type at age 56. It can develop so fast that you have a normal PSA result one year, then it's both developed and metastasised before the next annual screening.

That's what had happened to one of my roommates in hospital (an Afghanistan vet who'd already survived a lot of awful stuff in his life, including losing part of his squad to an IED).

There are some things you just can't plan for, or, as Monty Python once said, "Nobody expects the Spanish Inquisition!"

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@heavyphil
Thank you for the reply. I am one of those guys where my cancer doesn't express PSA all that much. I don't beat myself up about not getting treated sooner. The quality of life I experienced in between treatments was well worth it. I wish you the best in your journey!

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@northoftheborder

Yes, my oncologist (at the time) told me that about 1/20 cases of prostate cancer hit young and develop very fast. They're more common among men of African or Caribbean ancestry (which is why they need to start PSA screening younger, in their mid 40s), but that doesn't apply to me, and I still got hit with the aggressive type at age 56. It can develop so fast that you have a normal PSA result one year, then it's both developed and metastasised before the next annual screening.

That's what had happened to one of my roommates in hospital (an Afghanistan vet who'd already survived a lot of awful stuff in his life, including losing part of his squad to an IED).

There are some things you just can't plan for, or, as Monty Python once said, "Nobody expects the Spanish Inquisition!"

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@northoftheborder
What was weird about my case an insurance actuary discovered my prostate cancer from behind the desk, miles away. I was in the middle of a real estate transaction, and my bank wanted me to get more life insurance. After applying the insurance, the company said we will issue the policy once you have a benign prostate exam. I said I don't have prostate problems. My PSA was 2.9 at the time. The urologist told me to come back in 6 months because 4 is normal. I went back in 8 months, and I was then 6.8 or something close to that. The insurance company didn't like I went from .9 to 1.9 to 2.9 in an 18 month span. I did get a second 2.9 reading before the urologist said come back in 6 months. Neither one of us was guessing prostate cancer, but the insurance company knew.

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@mrlucky200abc

@northoftheborder
What was weird about my case an insurance actuary discovered my prostate cancer from behind the desk, miles away. I was in the middle of a real estate transaction, and my bank wanted me to get more life insurance. After applying the insurance, the company said we will issue the policy once you have a benign prostate exam. I said I don't have prostate problems. My PSA was 2.9 at the time. The urologist told me to come back in 6 months because 4 is normal. I went back in 8 months, and I was then 6.8 or something close to that. The insurance company didn't like I went from .9 to 1.9 to 2.9 in an 18 month span. I did get a second 2.9 reading before the urologist said come back in 6 months. Neither one of us was guessing prostate cancer, but the insurance company knew.

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Yes, we don't all start with an MRI to the prostate. Sometimes it's just a backache, loss of balance, or curious insurance actuary. 🙂

I never had an MRI of my prostate. Instead. they did the MRI on my thoracic spine, where the metastasis was. Then they did a biopsy to see what kind of cancer it was. The day after the biopsy I lost use of my legs, and was rushed into emergency surgery. A couple of days later the biopsy results for the spinal lesion came in saying cancer of prostatic origin, which my surgeon had already guessed. By then, there was no point doing a second biopsy on the prostate itself, because we already knew what it was (and that it had metastasised).

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@mrlucky200abc

@northoftheborder
What was weird about my case an insurance actuary discovered my prostate cancer from behind the desk, miles away. I was in the middle of a real estate transaction, and my bank wanted me to get more life insurance. After applying the insurance, the company said we will issue the policy once you have a benign prostate exam. I said I don't have prostate problems. My PSA was 2.9 at the time. The urologist told me to come back in 6 months because 4 is normal. I went back in 8 months, and I was then 6.8 or something close to that. The insurance company didn't like I went from .9 to 1.9 to 2.9 in an 18 month span. I did get a second 2.9 reading before the urologist said come back in 6 months. Neither one of us was guessing prostate cancer, but the insurance company knew.

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Not to be flip, but I actually employed an actuary to set up my business Pension Plan. He was an odd duck to be sure and had the sensitivity of a lump of coal.
After retiring at age 67, he called me to say that by his calculations I had enough $$ to live comfortably into my late 80’s and he had no doubt that I would do so.
“Really?” I asked with a smile in my voice….”Even having had prostate and bladder cancer?”
The phone was silent for about 15 seconds snd then he said flatly, “Oh, OK….then let’s say 75”…..
I tell you, the guy’s a numbers zombie and has not a jot of empathy, humor or compassion in his entire body….

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@heavyphil

Not to be flip, but I actually employed an actuary to set up my business Pension Plan. He was an odd duck to be sure and had the sensitivity of a lump of coal.
After retiring at age 67, he called me to say that by his calculations I had enough $$ to live comfortably into my late 80’s and he had no doubt that I would do so.
“Really?” I asked with a smile in my voice….”Even having had prostate and bladder cancer?”
The phone was silent for about 15 seconds snd then he said flatly, “Oh, OK….then let’s say 75”…..
I tell you, the guy’s a numbers zombie and has not a jot of empathy, humor or compassion in his entire body….

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Ouch! I'm planning to retire next March. I'll be sure not to hire the same guy as you!

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Scotty ... I have been praying for you . I dotn know if it helped but , I prayed for yoru health and positive attitude to tackle your PC issues . Keep positive. Keep getting support and going to your PC support meetings . They help ! Keep us in the loop of how you feel , We care ! . James on Vancouver Island .

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