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.

One other thing I experienced early on was the irrational (but apparently common) belief that if I refused to accept cancer and the changes it brought to my life, there was somehow still a magical chance that things might go back to the way they were. I never would have articulated it this way, and would have agreed that it was dysfunctional (and absurd) if anyone asked me, but still, it was there.

What I was really doing was refusing myself permission to learn to love my new life — after all, time doesn't have a reverse gear — but I'm not beating myself up for it, because I think I had to go through that then to get to where I am now (loving my life exactly as it is).

Acceptance means making peace with change and uncertainty, not giving up hope.

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@brianjarvis

In addition to the links I provided above, here’s a paper about the benefits of exercise to counteract the adverse effects of ADT —> https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

I don’t run as much as I used to, but I still use an elliptical machine at the local gym - anything to keep things moving. At one point I enrolled in a water exercise class at the local Y - that form of resistance training helped keep the pressure off of the knees. Again, anything to keep things moving. No excuses.

Being a gym rat, I managed my own weightlifting and cardio regimen without the need for a personal trainer. Based on my tracking, along with a noticeable loss of muscle mass, I experienced an approximate 30% loss of strength. But, it never prevented me from engaging in any vigorous activities. As my strength dropped (due to the loss of testosterone), I had to reduce the weights I was lifting so as not to injure myself (muscles and joints) during that time. (Always listen to your body.) Setting expectations as to what’s possible while on ADT is important.

Despite being on Eligard at 65y, I pushed myself and swam in U.S. Masters and Senior Olympics events in my state in 2021. I didn’t make any world records(!), but I was competitive in my age bracket. More importantly, it kept me active and in shape while on Eligard. Never give up.

Just as most cancer centers have trained counselors to help men and their families get through the mental health aspect of prostate cancer, many have fitness programs to help men get through the physical and dietary aspects of prostate cancer and hormone therapy. Consider contacting them.

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I do have to say that exercising is one of the few times during the day when I'm NOT ruminating about prostate cancer so even if it had no other benefits (and it does) that alone will compel me to keep doing it.

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I think about cancer Several times per day, but it is less intense now than before. I was diagnosed 3 years ago, had 12 months of ADT and Erleada and robo surgery and off of all meds now for 18 months. I retired a little before I was diagnosed and Being retired or working less is a good thing.

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@anselmo1

Scott, you sound exactly like me when I first started Lupron. I am an Internist and understand these things a bit more than most.
Please ask your Oncologist to drastically decrease your dose of Lupron. Try the 3monthly dose which is less than half of what you seem to be getting now. Decreasing the dose helped me tremendously without affecting the efficacy of the drug. I remained hormone sensitive for about three years and was able to continue to work 12 hours a week to date doing consults in my practice.
By all means see the Psychiatrist and the mental health team for all else they bring to the table.
Stop the starvation diet and find a way to accept the fact that your sex life will most likely never be the same. The brain is your most important sex organ and the diagnosis and treatment of prostate cancer primarily robs you of libido. In my case, a naked woman or even erotica might as well be covered furniture.
I would quit the gym. Do as much walking as you can but don’t exhaust yourself.
Remember, we are very lucky to be living in this Universe at this time, the probability is in the trillions of trillions, so ride it out. You can still find some joy once your maintenance treatment is adjusted to manageable doses.

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I think what upsets me most is that, when I asked about Lupron side effects, I was told "you will likely have some hot flashes" (I haven't had any) but that was about it. I read all the side effects on the brochure and when I saw the alarming ones they were downplayed. Depression wasn't even listed as one, neither was insomnia, though I suppose it can be argued that the cancer diagnosis itself causes depression and insomnia rather than the medication.

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@proftom2

It gets better, much better. I'm sitting here in my Lazy Boy feeling your pain. We've all walked the same prostate cancer path. Pain, depression, and fatigue are a part of fit. But, so is learning to live with cancer. Creating Quality of Life goals are mega important.

We live two lives. One, our life before our prostate cancer diagnosis and two our life after our prostate cancer diagnosis. For most of us on this board we've been disgnosed and our life is getter better.

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Thanks. Do you ever reach a point where you can go an entire day without thinking about cancer?

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@edmond1971

I’m sorry to hear you are going through this and here on the forum, but to that extent, you have found a strong support community, so that is a plus! There is tons of good input so far, so will try to share just new ideas

Meaning/Purpose – You are age 60 and claim to be “faking my way through work”. Congratulations, you are employed and have a job where your abilities allow you to be productive and add value. The issue here is that you are fully aware that your contribution has changed significantly, that is often hard to accept. My suggestion is to map out your retirement and come up with scenarios that allow for early retirement by reducing your annual expenses. Once you have a few scenarios mapped out, then take a step back, relax, and ask yourself about the meaning/purpose of your life. This is an extremely hard question sometimes (sometimes it is easy), but in general my suggestion is to get a piece of mind about the necessity of employment and in doing so to re-energize a new sense of meaning/purpose.

Perception by others – You are human, so it is perfectly fine to have raw emotions that result in worries and feeling down about how others perceive you as your body takes on radically different shape and ability, and your daily activities change. Just remember the physical side of our lives is just a tiny layer of physical material that is wrapped around who we are as a person. Your friends, family, sexual partners ultimately love you for who you are, not for the size of your muscles or the ability to maintain an erection. If folks truly don’t want you in their lives because of physical imperfections, let them go, gently.

Your feelings – How you feel is who you are, so embrace it (it is a gift of equal value to be happy or sad) and seek out a professional to talk to about how you feel. Dealing with cancer and the active grief that it brings may be the catalyst for bringing to the surface a multitude of pre-existing conditions not limited to trauma, loss of innocence, abandonment. This is heavy stuff, and you just need to talk with someone. You might need cognitive behavior therapy, who knows, but start talking with a professional and stick with it, they will help peel back this onion with you.

Three things – Refine quality of life by three things. 1, having a healthy bowel movement. 2, having a good night sleep. 3, being kind to people each day. A healthy bowel movement requires a good diet, increase your fiber, reduce ultra processed foods, but do what you enjoy and be mindful. You want a hot dog or ice cream, have it and enjoy it, just don’t do it frequently. A good night sleep might require taking long walks before going to bed, taking a shower before bed, stretching, drinking tea, etc. Find a way to infuse gratitude and calmness into your end of day activities and your brain should slow down and allow for sleep. Kindness - Being kind to people is key, sure you used to be very active and have f& buddies and do pre-cancer stuff, those are great memories and cherish them, but now try to be more Zen-like and express good wishes to people you see and think good thoughts.

Final thoughts – None of these steps are easy, life isn’t easy. Pace yourself. Your past is a treasure trove of memories and experiences, no one can take it away from you, share it widely and often as the opportunities present themselves. See this as an entrance into a new chapter of your life. Life is mysterious which means it is beautiful and terrifying at the same moment, we are lucky to have today.

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Edmond, thank you so much for that. I never had a true "midlife crisis" where I bought a new car and wanted to date 20-year-olds or any of that stuff. It was always onwards and upwards for me--I made a plan of what I wanted then went out and got it.

Now, for probably the first time, I'm facing a serious diminishment and I think it's just the start of many to come. I see younger people on the ladder behind me trying to knock me from my perch at work which would normally make me more competitive but now I'm ambivalent.

I was always stoic and had a good poker face, but now emotions are pouring out of me and I'm not used to it. I do volunteer work for troubled youth (am taking a break from that until I'm in a better mental space myself) and think of some of them I've helped in the past and, for the first time, I have a very real idea how they feel rather than just knowledge of their circumstances and what material things they require.

Your advice on kindness is something I already try to do but I feel that lately there is more sincerity behind it. I also have been walking five miles every day with my dog which is sometimes comforting and I sometimes wish I could be more like my dog--just living in the moment with no awareness of illness or death.

REPLY

It gets better, much better. I'm sitting here in my Lazy Boy feeling your pain. We've all walked the same prostate cancer path. Pain, depression, and fatigue are a part of fit. But, so is learning to live with cancer. Creating Quality of Life goals are mega important.

We live two lives. One, our life before our prostate cancer diagnosis and two our life after our prostate cancer diagnosis. For most of us on this board we've been disgnosed and our life is getter better.

REPLY
@anselmo1

Scott, you sound exactly like me when I first started Lupron. I am an Internist and understand these things a bit more than most.
Please ask your Oncologist to drastically decrease your dose of Lupron. Try the 3monthly dose which is less than half of what you seem to be getting now. Decreasing the dose helped me tremendously without affecting the efficacy of the drug. I remained hormone sensitive for about three years and was able to continue to work 12 hours a week to date doing consults in my practice.
By all means see the Psychiatrist and the mental health team for all else they bring to the table.
Stop the starvation diet and find a way to accept the fact that your sex life will most likely never be the same. The brain is your most important sex organ and the diagnosis and treatment of prostate cancer primarily robs you of libido. In my case, a naked woman or even erotica might as well be covered furniture.
I would quit the gym. Do as much walking as you can but don’t exhaust yourself.
Remember, we are very lucky to be living in this Universe at this time, the probability is in the trillions of trillions, so ride it out. You can still find some joy once your maintenance treatment is adjusted to manageable doses.

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Hi all, A reminder about the Community Guidelines, in particular guideline number 1.

1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

See the complete community rules here: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

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Scott: I know what your are going through as I had a Gleason 7 and 8 and had radiation and 18 months of ADT. It sucked!
I found that helping others helped me a lot. I volunteered to drive the shuttle bus at the local hospital one day a week and did some volunteer work at the church. It helped in getting my mind off of my own problems and gave me something to do. I also had a wife who I loved and I could complain to her often and she understood.
I did get some counseling and that helped me as I was just MAD that I had prostate cancer. Again, gave me someone to complain to.
Good luck and God Bless. Take it a day at a time.
Mike

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@scottbeammeup, you've gotten incredible support and tips from the gang here. I knew they would come through. I have but one thing to add. Sometimes it can be hard to find people who are qualified to work with people who have cancer like mental health professionals, physiotherapists, personal trainers, etc. I suggest asking if your cancer center has a social worker specializing in oncology. They can help recommend people and places.

Learn more about oncology social work in this blog post:
- - How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

PS: This discussion is helping many people. Thanks for starting it.

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