Anybody else still at work with the disease. I’ve contributed to a pension for 24 years, and with being diagnosed, am I being foolish staying at work. Note-minimum retirement is 58 at my work.
Also, did read this right, ADT only gives about 10 mos. to 1 year increase in life expectancy?
Short Bio-
56 years old
DX 3/23 (PSA 7.68 at the time)
Stage IV “oligometastatic” (one met, so far, on pubis bone directly against tumor in prostate)
Finished IMRT 11/1/23 (25 visits)
Meds- Zytiga/prednisone/Lupron
G7-(4+3)
Thank you all for posting. It has been very informative and at times inspirational.
Written by
BigJ32
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Do you enjoy your job? The people there? Can you still do it? Do you have health insurance that continues? Do you want to leave a chunk to any family members?
You seemingly tried to cure it. You will be on the meds for a while more. After you come off you might be surprised.
Yes to all the above, I guess I’m just thinking about time management in case it doesn’t work out. I’ll be on the meds for another 1.5 years. Hoping to be pleasantly surprised.
Good luck BigJ32! Remember also the meds make you emotional and tired. Walk alot, particularly before your day begins. It brightens things up considerably somehow.
Big YES to both of those side effects. Exhausted when i get home, and the emotions are all over the place. I do like the idea of starting my day with a walk. I will give it a try. Thanks again.
I was in same boat in 2021 (58 yo then) with one met in my T2 discovered by PSMA in Oct. Then early 2022 they found 5 more small spots in my ribs and started systemic therapy (ADT). That immediately made PSA undetectable and after 18mo (3 x 6mo injections of Lupron) of ADT I'm now on vacation from it. The "T" is slowly coming back.
I contemplated very hard early retiring (and using ACA to get subsidized insurance plan) due to less then ideal work situation and all the stress and depression from accelerated aging program which is what ADT really is for men in more ways than we realize. For now I decided to stay and keep working another year as it seems to take my mind of bad thoughts.
Make sure to start serious resistance training (heavy lifting) to slow/prevent osteopenia and osteoporosis and combat depression once on ADT. It may feel counterintuitive when you feel weak and exhausted but that works as reported by many. I let myself fall into this trap and digging out now. I discovered the world of variable resistance training and use X3 bar as much safer (for joints and risk of injury) way to get my muscles to failure vs traditional weights, cancelled my GYM membership and can do all my exercise at home/office using very little time.
Look up if you have local location of OsteoStrong and consider signing up. I have one just 7mi away luckily. I did not want to have any more drugs into my body (Prolia) to treat ADT side effects that have side effects of their own.
I've survived 5 years with initial 111 PSA and a met on my spine while taking same meds as you. Stay at work unless you were already looking for an excuse to quit work. The side effects of your meds probably won't affect your work much... at least for the next couple of years when you can retire. Good luck.
Thanks, you mentioned you’re on the same meds, do you notice when you do anything physical, massive amounts of sweating. To the point where my hair and hurt is soaked. I’m not talking about the hot flash feeling and mild sweating we get spontaneously. I can be working in the garage, and sometimes be soaked.
No I never experienced the profuse sweating that you describe (although I'm uncertain if your sweating after working in the garage is due to heat or exertion). I did experience bed-soaking night sweats, which were different from hot flashes and which subsided in less than a year.
"Also, did read this right, ADT only gives about 10 mos. to 1 year increase in life expectancy?"
Increase compared to what? No ADT at all? There has never been such a trial- it would be unethical. For men with low volume mets, median overall survival was 8.3 years if they took Zytiga+ADT vs 5.6 years if they took ADT alone.
If you exercise the right way, studies show PCA mortality odds drop sharply. Resistance exercise, aerobics, cardio -- daily. The more the better. This also helps a lot with ADT side effects. You will find lots of posts about this here. Also you should become familiar with trials pertinent to your case specifics. Discuss them with your MO.
Read my bio. My husband has just entered his 20th year at stage IV. It is NOT a death sentence. Just be aggressive with treatments. Les, my husband, still received Lupron every 6 months and leads a normal life for a 75 year old.
I just read your bio, that is AMAZING! I love reading the success stories and the journey. So uplifting, and gives hope that this is manageable. Kauai is amazing, taking my wife to Hanalei for our 20th this fall.
Les's prognosis was pretty grim back in 2004. They threw everything at him because he was young. He'll see his doctor Feb. 26 and get his 6 month Lupron shot. He still smokes, although not a heavy smoker, he doesn't drink, but his diet is lousy. He is not a fan of food! By the way, I live in Princeville, a mile and a half from Hanalei.
I’m 73 and love my job because it’s enjoyable, I get to work outside, there’s lots of nice people to work with/for, it provides me with great insurance and the money that my wife and I need to enjoy life. I work a 2 week on and 2 week off schedule (12 hour shifts) and have been on Lupron, Zometa and Xtandi for about 2 years. Prior to that, I was on Abiraterone, Zometa, Lupron and prednisone. I just recently completed SBRT to spine, clavicle and prostate. That was truly a Christmas wish come true because of the pain relief that it provided. Bottom line is that everyone’s disease and journey is different. I’ve had plenty of ups and downs, but there’s not a whole lot I can do about things except to accept them and keep moving forward. One of the things I had to accept was that I had to continue working to take care of medical bills. Just as an FYI, The Rocky Mountain Cancer Center in Billings Montana is where I receive my care. Wonderful Team of Doctors and Support Staff there. Money WELL SPENT!!
Howzit Brah, saw your profile that you're Hawaiian .
I was dx'd officially in 2015, PSA at 840.2, mets to L lymph nodes that collapsed the L ureter. That kidney is atrophied, but #s are good.
I worked 6 days/week back then, 5 now. Now, 9 yrs later (39 chemos, 28 IMRTs, PSA under 3) and 66 yrs old - I still enjoy being a DDS cuz it boosts my mood esp when I see patients who've been with our office for like 20 yrs, this March will be 25th yr here. And I love to joke and even sing random songs
We have multiple 3 generation families and two lil guys who are 4th Gen. Matriarch is a Cuban Refugee
Life is Beautiful - went home to Honolulu, saw Mom in nursing home, ate local grindz, did HNL marathon, had a blast😁. If you like, check my previous posts
QoL on Brah, Imua, Live Pono 💙
Patients drove down to do the ZERO 5k event for me, treated them to pizza and beers
I wrestle with this too, diagnosed July 2022, metastatic to bone, 67 and still working. Over a year into treatment and I don’t really think about it all that much. Lots of people report being on ADT for years. I do struggle with fatigue so I’m lucky that I work from home.
I’m sorry you have to deal with this at 56. But your attitude is paramount. “The big C” is very melodramatic. Try to tamp that down for your own good. You have a disease. You might die from it or you might with it. Who knows?
I was diagnosed with 4 mets in June 2021. Went on Lupron and Zytiga.
Within 1 year the cancer SUV measurements havd improved on all sites.
Just finished radiation and looking at getting off Zytiga and ADT in June.
I find that exercise is very useful, especially resistance training.
At 80 yrs, I am looking for several more years of quality life, though I am not thrilled with the side effects now. They have been pretty mild and you have to be proactive on managing blood sugar and cholesterol.
I read your bio and see you had 4 Mets on your bones. Am I reading your reply above correctly that you plan to stop all ADT in June. I thought Mets to bone meant life-long ADT. Your MO is ok with you stopping? Just curious, I had scattered Mets on pelvic bone and 1 LN and thought ADT forever.
Yes conditionally, I will be stopping ADT after 2 years. All my mets as well as prostate were radiated.
I say conditionally because my MO will evaluate scans to be done in June, but she is willing to agree to stop ADT is there is nothing of concern in the scans.
my husband just retired at 63 , diagnosed oligometastatic 5 years ago , he could have continued but decided the time was right .. he had been on intermittent ADT and is doing well , he was Gleason 9 with epe, perineural invasion and seminal vesicles all involved, psa 8.9 mets to t12 and a pelvic lymph node .
See if you can get meds for the sweating to make life more comfortable, I am sure will do well at work for a few more years at least . Best wishes ..
If you are oligometastatic, consider zapping the little bastard(s). They will eventually grow elsewhere but it adds a bit of time to your clock/kicks the can down the road.
Firstly, it's important to acknowledge that each person's situation is unique, and there isn't a one-size-fits-all answer. Continuing to work may provide a sense of normalcy and purpose, but it's crucial to consider your health and well-being. If your work environment is supportive and accommodating, and you find fulfilment in your job, I guess, that could positively impact your overall quality of life.
Keep working if you enjoy it, can still do your job well the people etc just as has been suggested. Trying to figure out how much time you have left takes that very time from you. There are many, many men on this forum and elsewhere with more advanced disease than you who are absolutely thriving..
Besides, the arc of medicine gets shorter all the time. You don’t know what new treatments may be coming for you.
In the meantime, the suggestions about exercise are the best ones, both cardiovascular and weight bearing. It is the metric more closely associated with longevity than all others, but the best part is the quality of life it produces-at the time of life when quality is typically on the way out.
Think about adding life to your years rather than the other way around for best results. Great luck to you!
I think the best advice is to listen to your mind & body. I retired at 62, same year as stage 4 diagnosis. Since then, I’ve enjoyed working several different part time jobs. This has provided me with an opportunity to learn new things, meet some great people, make a buck or two and most importantly stay active. If anything stands out on this 7 year journey it is to fight through the fatigue by staying active. A good five mile walk early in the morning sets up my day with an accomplishment that propels me forward. Taking a short sabbatical from my latest pt job to complete a 40 day stint of radiation to slow down the beast. Hang I there my friend. PC can throw you a lot of curve balls but you and all the supporters on this group will cheer on your home runs too!
At the age of 86 I discovered that I have prostate cancer, stage 4, Gleason 9, PSA of 72, but after taking a Orgovyx it dropped to 1.7, added Zytiga, and now it's 0.98. I am still living my life as before, for example I work, exercise, play pool several hours every day and basically, I continue to enjoy life even at the age of 86. I hope to live to 90 in spite of numerous metastases in my bones. I am essentially pain free now. It is helpful to exercise and to think positively. You might be surprised that you have many more years.
This fellow is only a kid at 84.5 years. I as well score Gleason 9 in half of prostate. There is one correction for me. I am an author of action/adventure historical novels and will not complete my work by 90. I have to go to 93 or 94 at least. I hope to follow you. Exercise and music will be my antidotes to the ADT poison. I don't have time to worry about prostate worries, got to get to work.
I have memorized the full scores for Beethoven's various recordings of his nineth, seventh, sixth, fifth, fourth, and third symphonies. The Ode To Joy still gives me goose bumps.
I was like you I retired at 56 back over 6 1/2 years ago. I was a emotional wreck from my condition, given 5 to 10 years to live. Had saved heavily for retirement to enjoy life and now would never make it to retirement.Had urinary incontinent from RP that lasted 7 months, didn't know if it would ever come back.
Had hot flashes like you water running off my face, had to change shirts, hair wet. Had ten to twenty a day.
My memory went to hell, I had worked in IT in a position as a senior coder which ment intense problem solving and original thought, which was now impacted severely. I needed GPS to get me around as I couldn't remember how to get places.
Had significant depression and felt life was over and I needed to salvage some life, that life was more than work. I was tired all the time. Got so much weaker from the drugs. Could make it thru the day with out a nap.
I quit work and never looked back. I bought a RV and traveled to all 48 states and some Canadian Provinces, it made me feel alive. I cycle and ride lots of miles as everything I've read said increasing exercise combats cancer. At my level of exercise it produces chemicals within you that help suppress cancer growth, meaning slows it down.
My wife quit work too, so we could travel together, be together.
My prognosis has improved greatly, I sought the best care in the US.
The cost of health insurance is high and it all depends what county you live in what kind of insurance you can get that is a PPO so you can actually get that care. As such I pay a lot with high deductable.
I bought a second home and live the winters in Florida
I'm making the best out of a bad situation. I research everything I can about PC and treatment and I could never do everything I do while working.
I actually believe I would have been fired due to reduced capacity, and mental impairment.
I took the stress out of my life that I felt would worsen my cancer. I've been able to rest and sleep. Actually live how life should be. My life expectancy has increased greatly.
I have been able to stay off ADT for the majority of my time as I also do not want to push my cancer to Castrate Resistant by continued ADT.
There are special 401 k provisions that allow you to take money out of 401 k without penalty if your over 55 for any 401 that you ended after age 55.
Both my wife and I started drawing SS at 62, there is a one time provision to allow you to pay back SS the benefits you received and then start it anew at another higher age with the higher payout, we plan to do that for my wife at some point.
Hello! My husband was diagnosed 6 years ago with Gleason 9 at age 52.He has had some mets in the pelvic region….the first one visible on pet scan in 2019.
He is now 58 and still working full time, and feeling great! He has had different treatments and even been off of all treatments for periods of time. He tells other men in his situation that the two most important things are:
1. Assemble a good team specializing in prostate cancer at a cancer center. Make sure you have medical oncologist, urologist, radiation oncologist. Don’t be afraid to get second opinions. Always go for follow up appointments in a timely manner.
2. Exercise to combat fatigue and muscle loss from adt. He has made it a point to walk at least 10,000 steps per day and do weight lifting 3-4 times per week. I know it seems counterintuitive if you’re feeling tired, but it truly has been amazing to see how he perks up after a good walk. His cholesterol numbers have even improved over these years. Please note he was in average 52 year old shape at diagnosis and had never gone to the gym in his life, but had an active lifestyle. His workouts are simple weight lifting in our basement using a rotation recommended by his doctor.
All the above to say, he is 6 years in and living life to the fullest. We just had his 3 month check up with psma scan and bloodwork, and there is no evidence of disease. Yes, there have been scary times when something does pop up, but we stay vigilant and address any issues swiftly.
Best of luck to you and feel free to reach out anytime!
I was diagnosed at age 55 with stage 4 cancer back in March 2014. Gleason 9. Mets throughout my pelvis, ribs, sternum etc. Also a couple of lymph nodes. I worked for a couple of years after my dx but it seemed silly, work seemed pretty meaningless knowing what I was staring down. I was fortunate to have a good LTD insurance plan through my employer and decided to dial down the stress, focus on my treatment and spend time enjoying life and family so I “retired”. No regrets at all, not one bit. I was able to get SSD and on Medicare as well.
I continue to kick the can down the road, you can read my profile to see what I’ve done treatment wise. Just remember that no one at your funeral is going to remember what a good worker you were only the memories of time spent with loved ones.
60 yrs old and still working as manufacturing engineer. I had a lot of cognitive problems with memory and such a few years back when I was on Xtandi and Firmagon, but now that I have changed up the meds, cognitive issues have improved. fatigue is still an issue, so I only put in 8 hr days now (no more long hours for this guy). Im still pretty worn out at the end of the day, but I enjoy my job, so its worth it.
As always, so much good advice and care in the comments you’ve already received. For me, my cancer diagnosis gave me a chance to reevaluate. After 22 years in the Army and 15 in industry in high stress jobs I came to the conclusion that while I enjoyed my job I didn’t want to spend the rest of my life, however long or short it might be, in that environment. I did independent consulting for awhile and got my life back in balance. After spending more time with my family and friends - it became clear that for me the right choice was retirement. Embrace your new situation and use it to enrich your life.
I continue to work, daily through chemo and radiation two years ago. I'm ready to retire when I hit 65 and have Medicare, but that's two years away still.
Nobody can tell you how long you're going to live. Everyone will tell you that you have 3 to 5 years. That means some men die fast and some live a long time. Set your sights on living a long time by first, forgetting the fear. It's natural at first but it's not going to help you. Second, see the best oncologists you can find and make sure they explain everything to you so you understand it. If you get a doctor that doesn't explain or that you can't understand, find a different doc. Set out on a course of treatment that gives you the best chance of a long, productive life.
Lot of people here can tell you more specific things. I know that men on this list claim to have lived 20+ years. OTOH, in 2022 I know two men who died from prostate cancer, one who had had it for no more than 3 years. Myself, I'm 3+ years so far with two years in a row of undetectable tumors. I'm not done, I'll never be done until there's truly a cure, but keep plugging away.
I would still work if you enjoy it and save money for a rainy day. You may consider applying for disability if you qualify and collect full non-taxed SS benefits while you work. Hope your treatments go well, lots of good options. (I'm still working at 69).
I'm entering my 4th year of stage 4 with multiple abdo mets and continue on Lupron/Erleada, with usual side effects, but still working fulltime and riding my motorcycles for work most days. PSA and T still undetectable, and so far, so good. I have an excellent MO, and had a good surgeon, and a Cancer Clinic that covers the costs and is only 20 minutes away, so I am really blessed. Carry on and keep working hard imo. I'm also 68, heading towards 69 in May
I was diagnosed stage 4 at the age of 42 in 2006. I worked up until 2021. Accumulative side effects finally took me out of the workforce. Also my knees went to crap so that also played a role.
Do want you want. Staying active and productive helps to maintain a positive attitude. P.A. Helps to combat the disease. Sort of a mind body spirit sort of thing. Eat good food. Drink good wine. Life is short so live it to the fullest. I will say that I am happy I left the workforce. I miss my friends and I miss the $$ but as it turns out, I don’t need as much as I thought I did.
H/T can last a long time. It is different for each individual. Medicine has come a long way since my DX. You may find yourself living to 100. You may get hit by a bus tomorrow. The poo T is that you should do what brings you joy. You will not qualify for SSDI until you fail initial treatment. Here’s to hopi g you never fail initial treatment. Virtual drinks on me😂
My husband was diagnosed in 2016, age 56, with 4 bone mets, PSA 74, Gleason 7 (4+3). He's still working and plans on retiring at age 65. He's a team leader in the printing industry. He played lead guitar in a rock cover band up until Covid, and is starting to consider getting into another band. Since Covid, he has also started learning piano. Besides the usual side effects from Lupron, he's doing well and tries to stay active.
And listen to Todd1963. He's an unsung hero of this and gave us hope when husband was first diagnosed.
Piano is an excellent outlet to rejunivate your mind and connect with other people. Read a good book, The Inner World of Piano Improvisation, by Ron Drotos. He assures us that a simple song smoothly played offers great entertainment for the player and listeners. Good luck.
retirement is overrated in my opinion. ADT stopped me from working in construction. If i had an easier job where fatigue was less important I would not have quit. So take many more vacations and quit only if you hate your job.. no overtime.
you are too pessimistic my friend. Was diagnosed stage 4 with bone Mets. Doc gave me a year.started me on ADT. Lasted 3 years. Went on to other treatments when ADT stopped working. It’s will be 10 years in 2024. I hope to add another 10. The cure is stay positive and hopefully you have a good ONC fighting tooth and nail for you.
Hey BigJ32............. If you like your job....... it's not a job........ So tell us what do you do for a living? I suspect you're not a gynecologist.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 01/10/2024 7:50 PM EST
"All we have are successive moments of now. Tomorrow exists in expectation, only!" (RoG)
I think the situation is individual and only you can decide whether you want/should retire. Having said that- do you have disability ins? That could be something that might impact your decision. I recall old posts indicated that metPC usually qualified for SS disability and maybe it qualifies for private disability insurance too. Just a thought.
I continue to work but also went through all these thoughts when initially DX'd. I think the work keeps my mind occupied and gives me some sense of normalness/routine.
yes cannot wait to get back on dirtbike. Final chemo is mid Feb so give it a month or so in which time i will work on it. Then mid march should be able to freeze my ass off and rip it!!!
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Hi Everyone
New Here - Wife with Stage IV Hubby
mcrpc , stage iv with aggressive treatments
