Hi, this in my first post. I was diagnosed with prostate cancer just two months before my 50th birthday (57 now). A young man in terms of prostate cancer. Had prostate removed, radiation for 7 weeks, and was placed on Lupron every 3 months. My Gleason score was 8. Surgery showed a 1 mm spot on the tissue surrounding my prostate. I am presently have a rising PSA on Enzalutamide and will be going on Abiraterone/Pedizisone pills.
I guess I need a place to vent with people who understand. My family support has been great. They have been there for me with all the ups and downs. But I find it hard to talk to them seeing the pain in their eyes because of what is happening to me. I am positive most of the time. I have learned to look at 1 day at a time, (harder than you think). My motto “Today is Good”.
After each failed treatment it is getting harder to stay positive. I look like Homer Simpson, have the energy level and interest in life of large snail, and hurt everyday now. Looking for any secrets, methods, or mind sets that can help. Thanks
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GoEZ
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I think your attitude is the best anyone can do. I learned to practice Mindfulness which helps me stay focussed on what is at hand. But it takes a few months of practice until it sinks in - I attended classes. I also attend a couple of prostate cancer support groups in my area. Cancer Support Community, UsToo and Malecare may sponsor such support groups in your area (try googling).
I have followed almost exactly your same path. Except I started at age 56 and am now 62. You have done everything "right." Please keep the faith and remember that there are still a number of tools in the toolkit.
I agree with Tall Allen's reply. In addition, I recommend that you request your urologist order a PET scan with Axumin. This will tell you and your medical team exactly where the PC is located. In my case it helped me and my team select the next treatment. And it's perhaps time to ask if you are a candidate for next-generation genetic sequencing, which can lead to even more PC-specific drugs...I am waiting for that order to be placed myself, thanks to another posting on this site.
I've had all the types of scans you can have. The VA is very good about looking inside. What would i need to ask for Genetic sequencing? How far does my PC have to progress to ask for something like gene therapy?
I don't know the answer to your question. I am waiting for that same answer from my MO, who I will be seeing in August. I'll let you know what he tells me. Hang in there!
😢 Welcome to our site, Stage 4 here , sorry to hear about your issue, I just lost my father in law due to similar situation. What does you oncologist have to say about your issues. Have you had bone scans lately. I know it’s tough to stay up in this situation, I have drawn my family closer, sold my business and a friend gave me a pocket dog that won’t let me out of her sight. She forces me to get up and move when I dont want to. Last but not least. Lots of pain meds. My doctor said the most important thing was for me to be comfortable and not to worry about addiction. Fight the good fight
Hi Larry, Had scan about 4 months ago. Some bone involvement (no damage) and two enlarged Lymph nodes. Just starting to feel pain in my legs and hips. Not enough pain that would require really strong meds. Most of my pain comes from my arthritis which was started by taking Bicalutamide (nasty stuff). As for stronger pain meds, watched my dad go down that road. He had heart problems for many years. He was a super smart and funny guy. He loved life and was always the life of parties and gatherings. It was a time when they handed out pain meds likes candy. It was very hard to watch what happened to him. I don’t know if that is the right thing to do, but I want to be here in the moment as long as possible. Putting off stronger meds till later. However he really liked his cannabis. I gave him the same lecture he gave me at 18 when he caught me with it. He laugh at me and said he wasn’t going share it with me. Got to love him. Thanks
Yep the side effects from all the meds is bringing out all types of pains, hands are awful in the morning, shoulders are always hurting but glucosamine does help, the bright side is that I’m on the right side of the grass 😜😜😜. Fight the good fight. Good luck
If your hands are stiff and painful due to ADT (it's a common side effect) I suggest the following:
To relieve the pain: run your hands under alternating hot and cold water. A couple of minutes would loosen up my hands, stop the "trigger finger", and clear up the pain.
To prevent the pain from being bad in the morning: sleep with clenched fists. That sounds hard to do but I got used to it and was able to do it.
To solve the problem: do very large numbers of hand exercises - I clenched my fists tight and then opened them, pressed my fingers of each hand against the fingers of the other, and squeezed a rubber ball or a hand exerciser. Over a few weeks it made a big difference. You have to keep it or the pain will return, but you may not need to keep it up at the same level.
I was also diagnosed with stage 4 at 52 last year. We can’t sugar coat it, it is not a cheerful event. But that doesn’t mean the end is coming either. I agree with the comments above. I’d also like to add
- get your genomic profiling done if you haven’t already. There are plenty of targeted therapies.
- make sure you’re at a reputable center with people who can think outside the box
- exercise and diet helps me mentally and physically a great deal.
Just tell them you want to have an appt ASAP with a place that does genomic profile. Explain to them what it is in case they don't know so it'll get approved quickly.
I have been in this battle for almost six years (please see bio for complete treatment history).
A Guardant360 liquid biopsy which requires only 2 tubes of blood will give a genetic profile of your cancer. Most results do not yet have treatments, but BRCA 1 & 2 and ATM do.
Aggressive cancer needs aggressive treatment and quality of care matters. Try to get a Medical Oncologist who specializes in PCa.
The problem of staying positive and battling depression can be a hard one. It's as if thinking about our demise, whether it's coming soon or is still some years off, makes us disengage from life. Paradoxically perhaps, thinking about death makes us unable to think about and enjoy life. I like the ideas posted here, but I'll add a few more.
First, I think all of us who answered your question are trying to help you. We're doing it for you but, in a way, we're also doing it for ourselves. When we care about others, whether in our families, among our friends, or among strangers facing problems like ourselves, it's as if we're voting for life, all life, our lives as well as yours. I know that I'm going to die but I also know that billions of other people are going to live, and when they die, billions more are going to go on living. We are part of a human community and that community will continue after us and, hopefully, realize many of the goals that we care about. I like to think about my children and grandchildren, and other people's children and grandchildren, as carrying on after me. I will cease to live but the things that are important about me will go on living and go on developing.
If you are a person who works for family, community, charitable, or political goals, keep doing that. The human family will continue and can still benefit from your efforts.
If you have personal goals, reading, learning, listening to music, traveling, hobbies, meeting others, keep doing those too. They are just as meaningful now as when you first discovered them. And if you aren't engaged with life, now is the time to begin. Unlike the guy who drops dead of a heart attack, you've been given a little time. Use it to advantage. Make the most of it. Enjoy it. Offer it to others too. It's precious. Don't give it up to despair.
Is that helpful? I hope it is. It may not completely cure your depression. Anxiety and depression are problems that can't easily be banished. They come back and, when we're under pressure, we may face them every day and every hour. But we can beat them for many hours and even many days and each time that we do we grow a little bit stronger and a little bit better able to fight on.
Thank you. It’s just every time something fails is just a kick in the stomach. For the most part my spirits are up. I have a really good support system. I stay busy with my grandsons (teenagers). There are plenty of projects around the house to stay busy for years. The wife is always planning trips and wanting to go places. However, you know how this ride goes, every once in a while you fall into a hole. This hole was a little deeper than normal. 8+years in I have found work a rounds for the fatigue and pain, but the emotional aspect of this illness still elude me. The good part of this event is I found this site. I have read so many stories that I could have written. The responses I have received have already give much information and good advice. I feel a little ashamed that you guys are cheering me up when your journey is more advance than mine. Thank you all.
Yep, the holes are out there and sometimes they're pretty deep. We can't help falling into them, but I get the impression that you're a pretty good climber. You've been doing it for more than 8 years now and it sounds like you've built yourself some ladders and learned some pretty good climbing tricks.
I know that you're going to have some bad days but I believe that you're going to have good days too. When you're deep in the hole and feeling like you've been kicked in the stomach, I want you to look up at the blue sky and think, Dammit, I'm going to get up there and see that sky again. I'm going to get up there and feast my eyes on the people and things that I love. I know that this damned disease is going to get me, but it's never going to take my humanity. I'm going to live every day until the day I die. I'm going to be the man I choose to be. I'm going to live the life I choose to live and even when it's time to die, I'm going to die the way I choose to die. I might get kicked again and again, but I won't give in to despair. This is my life and I'm going to live it fully, all the way to the end.
I wish the very best to you and to all the people facing all of the hard difficulties of our lives.
Thanks for your words, climbing out of my pity pool. Just bracing for a new set of side effects. Started my new treatment two days ago and shorting my vision again. (Today is good). When I look down the road it gets murky and full of shadows. Many of you are so much further down this road and are still going strong. Maybe the shadows aren’t that dark anymore. Just the few days I’ve been on this site has shown more options. Your outlooks, mind sets, and words ring true. Thanks you again.
My heart goes out to you GoEZ. It’s an up and down rollercoaster of emotions- hopefully more good than bad. We thought it was over for us a few months ago, and now here we are. My Dad was able to finish his 34 Ford after 30 plus years. He’s been able to take it to all the local car shows. 2 trophy’s so far and counting.
I'd love to see that '34 Ford. In just 15 or 16 more years you'll have to call it a 1934 Ford to distinguish it from the 2034 Fords. Could you post a photo or a link to a site with photos of it? Please tell your Dad that there are folks on this website who are interested in what he did.
I was diagnosed at 55 did the surgery, radiation, taxatere, Zytiga and now my PSA has gone from 0.7 to 2.8 in. 3 months so back to my OC next week to look for a new plan. I understand the frustration and also do get down but I look at life each day as and opportunity to spend time with my family and friends. I’ve always been a positive person but have hated the way this disease has changed my looks (gained 40lbs) and reduced my ability to do some of the things I enjoy like golf. I’ve committed to dropping the weight through diet and exercise (lost 14 lbs since June) and have also been working on my golf game since I enjoy the game and the beauty of a course.
If you get down the disease wins. Keep up the fight, find and activity to keep you focused on something other than the disease. Hang in there brother!!
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Devastated - new here - needing information - 
Hello, I'm new to this site
New to Lupron
New to this Site
