For those of you still working with advanced PCa, and on ADT and Radiation. Did you still work a full schedule?

[Johnson411]

Looking for some guidance. Advanced High Risk PCa, Gleason 9. Had Turp for Quality of life, but still having incontinent issues. Currently on Lupron, Abiraterone, Prednisone with Radiation to start in 2 weeks. I am still working but need lots of time for appointments every week and radiation has not begun yet. I have a fairly big role and am not sure I can give it what it needs. I welcome your thought and guidance. Should I transition out and focus on my health & fitness? Thank you in advance for your thoughts.

[Dropzone]

I had no significant interruption in work or daily activities after initial treatment recovery which consisted of Lupron with docetaxal, then surgery (PUNCH Study) followed by radiation. After radiation I was put on Lupron "for life" and later had Zytiga added. Still no debilitating effects that affected work or daily activities although some fatigue was felt. Added Xgeva for bone mineral loss which I felt increased fatigue and caused some joint pain which I was able to mitigate with some anti-inflammatory supps. Still not terribly debilitating. Next came the PSMA targeted ARROW Clinical Trial with Enzalutamide which knocked me on my butt to the point of affecting work and daily activities. I decided to retire and concentrate on recovery. I have one more infusion with the study and hope to be able to get back to daily activities including long walks and some weight training. Not gonna come out of retirement though😊

[Johnson411 in reply to Dropzone]

Thank you for your response. Greatly appreciate the perspective. Best, David

[rogerwegner]

I found that the fatigue from the cancer did not let me work a full schedule at my business and after one year I had to sell my furniture store and go back to being a one man upholstery shop . I needed a flexible and shorter workday. Some days I just have to recharge my battery and stay home. It has been 13 years since diagnosis and I am still putting in 3hours on a good day ,but I am slowing down.

[Johnson411 in reply to rogerwegner]

Thank you. Appreciate you taking the time to reply! Best, David

[Boywonder56]

I got on disa bility at 62 so could get medicare at 64....was and am a small const. Co owner and hands on carpenter...my 14 hr days are 6 at best ..my 16oz hammer replaced my 24 oz...the numbers i could keep in my head no mas...am on lupron/erleada...4.5 yrs...strength has dimmished greatly along w evrything else except weight...plus 40lbs...i travel more to my homes in mi. And nee mexico...and only work for old clients...time is precious to all apc warriors....look at tom67 ....

[fireandice123]

With the exception of the time each day to actually get the radiation I was able to fully work while on Lupron and radiation. I had minor urinary and bowel issues but nothing major, and both went away within a couple weeks after radiation ended. My fatigue level didn’t seem to increase during radiation though it has subsequently increased after radiation. I suspect that is primarily due to the Lupron, not radiation.

[PGDuan]

Hi Johnson, Yes, I carried on almost as usual except for the daily appointment which I had first thing in the morning. I kept surfing several days a week and even started a company that has grown rapidly.

The whole ordeal wasn't easy, but I let close friends and supporters know and they supported me. I went to bed early, slept a lot more than usual, and I tried to eat well. I was probably a bit foggy at times, but never too much. Exercise really helped - I'm addicted to surfing so I always found that I felt better after paddling out. I couldn't rally to do anything else...I just couldn't get motivated for the gym. Hang in there, keep going, take each day as a gift.

[Tonwantonga]

I have found that even though I am still working full time, my heart (and brain) isn't in it any more. There are a lot of shifted priorities, and if I could afford it I would walk away from my job and focus on family time, my old cars, and some travel. But I am still at my desk, I have to make sure I last longer here than my mortgage payments. This year I have used up all my sick time and most of my vacation time on days off for treatment (Chemo and radiation) and doctor visits, so no vacation trips this year. I still have kids at home that I want to take places and show them things before they grow up and go off on their own. Next year should be better for me, but how many 'next years' do any of us have? get out and live while you can, if you can.

[Tall_Allen]

I found radiation to be a big non-event. I went to the gym more than ever and continued to work.

[treedown in reply to Tall_Allen]

Ditto

[SkyH in reply to Tall_Allen]

Tall Allen, did you explore brachytherapy for your radiation?I’m considering Dr Chang at UCLA.

Seems like a viable option.

[Tall_Allen in reply to SkyH]

Yes I did with Jeff Demanes, before he retired. I would now consider Mitch Kamrava at Cedars, who he trained. SBRT is modeled on HDR brachy so outcomes are nearly identical. I could have tossed a coin. I decided on SBRT only because it was easier and cheaper.

[timotur in reply to SkyH]

I would highly recommend Dr Chang. He did my HDR-BT/SpaceOar with excellent results (see profile).

[Dett]

My husband has continued to work full time since his diagnosis two years ago. He’s on a Lupron equivalent, abiraterone, and prednisone, plus he had an extensive course of radiation over several months. His side effects from the drugs have been less debilitating than for some men; however, he does tire more easily now and he doesn’t feel as mentally sharp. Radiation has had no discernible negative effects. My husband just turned seventy and plans to retire this year, largely because he has lost enthusiasm for the work for a variety of reasons that have nothing to do with APC.

Ironically, the Covid lockdown has proven to be a Godsend regarding work. Until recently, husband has worked exclusively from home for the last year and a half, which allowed him to have the flexibility to take a nap during the day and work outside of normal hours. It also cut out about two hours of daily commute time. He now goes to the office just two days a week.

Of course, the decision to retire depends on a variety of factors - the nature of your work, your financial situation, the extent to which you suffer from the side effects of treatment, etc. But if you have the option, you might find that working from home offers you the flexibility that you need.

[Cooolone]

I work(ed)... Was working when diagnosed, and returned to work 1 week and a half post RP. Continued working when on ADT & Salvage RT (IMRT 40 sessions). Kept working and when persistent discovery revealed Stg IV, went back to work 1 week post attempted Appendectomy when the mets were found in my Peritoneal... It was at this point when physically and possibly emotionally I questioned the value of work. I work(ed) in a highly competitive, high stress, high profile project environment handling a few hundred million in contracts, subcontractors, performance, schedule, risk assessment, etc., etc... And even though in my 50's qualified for early retirement if I wanted to exercise this option. Since my 2nd abdominal surgery and diagnosis of "rare" presentation of PCa with a dim chance to even prognosticate my condition (MO's words). I began to reevaluate what "TIME" meant to me.

The one resource we cannot buy, cannot cash chips in on... "TIME"... As such, I'm currently not working but haven't pulled the plug on retirement either. Although I think it's a forgone conclusion! Don't get me wrong, I out in my time, effort and blood, sweat and tears to an industry I love! I have great accomplishments and have had a great path through it all. But there's nothing left for me to do, I've done all I can. There's plenty of new blood behind me to carry the flag! So I think it's "TIME" to enjoy life, enjoy all those ridiculous things I never seemed to have had time for, etc. And it's not because I think I'm out of time, I hope to laugh about all this 2+ decades from now! But what the experience of being diagnosed, treated and walking through CANCER has done for me is allow me to reset my compass! It's time, but I am not prepared as something like this was always in the future, I was still saving for retirement, lol... But now I'm about to become a liability to my savings than a contributor! Hahaha... I've earned my kids I may spend their inheritance! lol

And I've thought about semi retirement, but not in my industry... Maybe making custom knives or something artsy, or becoming an Expert Bourbon tasting tester! Hahaha... Anything... But the same ol' thing

Good Luck and Best Regards

[Boywonder56 in reply to Cooolone]

Cooool response.....and i concur....live life...leave life w no regrets....esp after dx....my heart is tied to a woman that wont take the leap and leave the big city for our placecin the mtns.....im weighing the cost....

[Hidden]

I worked also but was in no hurry to go back to work. I used 6 weeks of STD after my RP( was at my beach house) and and switch to 6 hour days during Radiation treatments. I earned that time off so I took. It's not a contest.

[treedown]

I agree with tomtom no contest. Do what you feel is best for you. Just because it was easy for some it was difficult for others and everything in between. Only you can make the decision for yourself and unfortunately you won't know for sure until you start treatment if you made the right one unless you wait and make it after a few visits to the radiation vault of your choosing. Best wishes for a good experience for you.

[MarkBC]

I was a high school teacher and diagnosed at age 55. I did chemo and have been on ADT for 3 years. I rarely took sick days during my career and had enough built up to allow me to be home during 5 months of chemo. During that time I thoroughly reviewed my finances. Fortunately I had disability insurance and my stage 4 diagnosis qualified me for a disability pension. My income would be reduced but, with my savings and with home equity as a backup, I would be able to manage financially. So I made the difficult decision to retire early from the job that I loved. It was one of the best decisions I have ever made. I now have time to focus on living a healthy life. I am feeling good and my cancer is staying suppressed. I credit the lack of stress from work for part of that. The reality is that, with the fatigue and brain fog I experience from ADT, there is no way I could cope with 30 teenagers in the classroom all day long even if I wanted to.

My advice is to retire if you can. With our disease, we don't know whether we are going to live for another two years or 15 years. I doubt there are many people on their deathbed who wish they had spent more time at the office.

[Danish-patient]

My diagnosis is now 14 years old and I have undergone most available treatments since then - although not yet chemo. I have continued working all the time as a film producer and journalist. It brings me a lot of joy and helps me focus on other things than my disease. I believe this is a very important part of staying as healthy as possible, especially when you know that your disease cannot be cured. Without these distractions from my disease I would risk falling into depression. Three years ago I started my own company, still focusing on film production. This gives me the extra flexility that I now find important. This is just as much related to my age of 65 years as my treatments. I used to be a department manager within a large company, and it brings me comfort to know that my old department is still going strong and will continue functioning into the future, no matter what happens to me.

[London441]

Agree that radiation is non factor. Same with Zytiga and prednisone. It’s the Lupron.

I worked, but I made very sure to lift weights hard and regularly while on ADT. If you want to thrive on the ADT it’s a must. It’s a must anyway, but especially with suppressed testosterone.

The fatigue from muscle wasting can be brutal but lifting is its Kryptonite. Be good to yourself!

[GreenStreet]

A difficult choice if you are working in a demanding full time role. I think I would be tempted to try and continue if you are in a position where if you stepped down you are unlikely to be able to get back to some sort of work that you enjoy. I have been very fortunate in that I have been working in some interesting roles that have not been full time and so I have continued. I took 2 weeks off post RP but could work a bit from home during that time. I worked through Radiation but needed to make work adjustments on some days to schedule the radiation. I also worked during the short 6 months period I was on Lupron but it was more difficult because Lupron side effects did not help my sleep. The one thing I would strongly advise is to ruthlessly prioritise your medical appointments in all cases. The other point is that I would seriously consider giving up or scaling down if you can financially if work is causing you to be very stressed. APC and stress are not a good combination imho. Good luck and best wishes with whatever you decide to do.

[Billybob2]

Fatigue may/will hit you after few weeks of radiation. I was only on eligsrd and casolex ? 26 sessions. After abt 10 or 12, fatigue got me. Slept alot. I lift weights and did Tai kwondo 4 35 years. Could not keep going. Your choice b prepared

[pbaldwin]

I am an online retailer (amazon, walmart, ebay, etc). Right now it's just me and I work about 6 hours a day. On ADT, Zytiga, & Prednisone. Next month, makes 5 years fighting with Stage IV, Gleason 9. It works for me. My schedule is very flexible and I work alone. I don't have the temperament for employees, etc. It does get very hectic around the holidays. Last year I did the onslaught by myself. This year I don't know if can handle all of that. I will definitely get some temporary help. Just my experience.

[TylexGP]

I am also G9 with a suspect Node. I am currently in early middle of my treatment. ADT +Zytiga since May. HDR Brachy Therapy almost 4 weeks ago and will start EBRT for 5 weeks on Monday. I am a consultant/contractor transitioning back to fulltime with a new company. My current manager has been great about the appointments and I feel good so I have worked fulltime other than a couple of days off for the HDT. I am fortunate the ADT has not been too bad mostly hot flashes. My plan is to continue to work as I have upto now and adjust as needed.

[wagscure259]

Back in 2015 I did 45 IMRT sessions without any interruptions in a full time, pretty aggressive, full time 10-11 hour work schedule fortunately without any bowel or bladder side effects. Additional fatigue from 3 month Lupron injections was a non-issue. As has been stated here many times “we are a study of one” as it relates to response to treatments. I was of the mindset that I wasn’t going to let the radiation treatments stop me from doing what I love!

[Crummy64]

I think it partly depends on how much you enjoy your work. If you do, then keep going - it’s a marvellous distraction from the ever present worry with advanced prostate cancer. My husband, a farmer, has been able to keep doing what he loves even though he has spent a lot of the time feeling pretty terrible. ADT, the past 6 months of docetaxel and pain from his very extensive bone mets have taken a heavy toll. But he gets motivation and satisfaction from still being able to work, albeit at a much reduced rate. Teaching our daughter, who came home last year and is taking over the farm management, has also really kept him going.

[EdBar]

I think it depends on your job requirements. I was dx with Stage 4 G9 in 2014 when I was 54. Went on ADT immediately and had radiation treatments in the first 6 months. My job was stressful, required frequent travel, financial responsibility and supervision of 20 different operations. I continued to work for 2 years while two of my kids finished HS. Radiation was no big deal, some fatigue was all. When I had chemo per CHAARTED that was a game changer, I decided to retire and my status allowed me to qualify for disability and take advantage of long term disability insurance my company provided.

Between the physical changes, brain fog etc work seemed silly. Then I attended a friends funeral who died early from brain cancer. None of his kids or family talked about what a great worker he was. They spoke of the time they spent together. That’s what’s most important, taking care of yourself, enjoying life and spending time with family and friends.

Ed

[Johnson411]

Thank you all for the great perspectives and as I guessed, all over the map depending on each unique situation. I have been working 10-12 hours per day for years and don't get enough time in the gym. I think I am going to take my leave and spend my time weight training, walking, spending time with my bride of 20+ years, and cooking some healthy meals. In addition, there is a list of home projects that will keep me occupied. If after the new year I am up to it, may do some consulting or part-time work. Thank you all for your heartfelt thoughts. Wishing you all the best on your journey!

[Boywonder56 in reply to Johnson411]

Keep us posted......

[ppulatie]

I was in the legal profession as an analyst on cases and expert witness. Found that the brain fog made it extremely difficult to continue since I had to testify in court. So dialed the work down to next to nothing. Then with Covid, the work stopped all together.

[MateoBeach]

Yes, IMO if you can transition out I would do so. The radiation will likely cause additional fatigue even though the treatments are easy. The year I was diagnosed, 2007, I had RARP, 6 cycles chemo and 30 RT in rapid succession. Took the opportunity to transition out and was retired except for volunteer activities the following year. Retirement is also a transition that must be navigated and adjusted to. But it is very rich and meaningful if you make it so. Since you are considering it I assume you are not one who loves their work so much you cannot envision any alternative. Retirement does not make us irrelevant, perhaps just the opposite. Another option may be to take an extended leave for health reasons with the option to return if you so decide?

[SUPERHEAT12]

I worked during 43 sessions of IMRT radiation with the limitation that after about 20 sessions I had to take a nap in the afternoon. I took the radiation early each am. I also had a strict workout schedule which the radiation oncologist had recommended to lessen the impact. I worked and traveled internationally while taking hormone treatment but the side effects of Casodex made it difficult.

[Horse12888]

I didn't notice much debilitation from the radiation, but I believe that's because I was so badly beaten down by the Lupron. I'm a writer, so physical strength isn't an issue, but I was out of my mind with fatigue, mood swings, hot flashes and a pounding depression, so my career certainly took a hit.

I kept a low profile, but once I was in a meeting and in a matter of a few seconds began dripping in sweat. My client couldn't believe his eyes. He looked as me as if I had caught on fire, which wasn't far from the truth. I explained what had happened, but this stuff does interrupt your life.

[dmt1121]

I am on the fence on this. I had a prostatectomy in 2016, have been taking Lupron since then and am have been taking Zytiga, prednisone and had SBRT on one leg two years ago. I also have a small (I hope) tumor near my bladder. I was working part-time during the pandemic and looking for a full-time position. I found one about four months ago and being in a very senior position, I am right back in the middle of high stress and working too many hours.

I get very tired sometimes but with exercise and good diet, I do reasonably well. Overall, I want to work shorter hours in a lower stress job....but I need the income. So, I do it as much for my wife, as I do for any other reason. As a professional with my background, it is difficult to find a good fit that is not high stress with too many hours.

The choice is individual and I would try to strike a balance, where your stress level is reasonable and activity and personal life are good. I plan to make adjustments to my situation for that very reason.

Pay attention to how you feel, it will tell you all you need to know. Good luck.

[Rocketman1960]

I can so relate to your predicament. The team needs your brain not necessarily your presence. If you can, find a way to slowly back out of the day to day activities and serve as a mentor and advisor for the projects. Be well!

[HerbieP]

I too cut work way back, eventually going on short term disability and now pursuing long term. If I don't get long term disability approved, I will retire. I am an executive in my company, my what used to be stellar memory in the tech world was my asset. With brain fog from chemo, I found myself losing track of conversations and when I was trying to hold a thought to add to the discussion - which I often lost. My proteges understand my brain fog so I still mentor them to hand over the torch and leave our clients in good hands.

Your outcome may vary, but I decided I didn't need the work stress anymore (I was a road warrior, type A personality at work - driven to achieve, super chill outside of work) and instead am focusing on diet and exercise, and completing many projects around my home. When/if covid passes and my projects are done, I will volunteer as much as possible.

I need to rest on the "bad days" and on the "good days" I'm physically productive so flexibility is key. If you love your work, it is a great distraction - I no longer love it thus my decision to go on long term disability or retire.

[TrashPanda72 in reply to HerbieP]

I feel your pain - I am at the exact same spot. Bad days = couch or hammock. Good days = ~50% of my previous output.

Exercise (150+ minutes per week over 130 bpm) keeps my brain “motivated but forgetful”. When I fail to hit the gym (whether due to low energy, doctors appointments, etc..) I suffer the mental consequences….

Unfortunately, I still have not found a way around the debilitating exhaustion…

Short Term Dissability from work runs out next month. Then I can try and get on long term Dissability from my (previous) employer. The SSDI program is so far behind, it is pathetic. I initially applied in June of 2020 (with compassionate allowance due to stage IV). Initial denial in December. I appealed the decision in January 2021. Just heard back last week (August 2021) that I finally have a Doctor appointment with a SSDI doctor to evaluate my claim in September 2021.

I have not worked steadily since I started treatment. TrelStar and Zytiga have left me always exhausted….

I did try to go back to work for several weeks at the end of 2020 beginning of 2021 because I needed the insurance to stay alive. I was not able to work 15-20 hours a week, when my average week should have been 50+ hours.

Work HR called and gave me the option of leaving my position, or take the (new in 2021) short term Dissability option. That has been a lifesaver, but insurance eats most of that money every month….

My big hope in SSDI is the access to Medicare. Also, as I understand it, I would be able to access my IRA’s early without penalty due to Dissability…. I had been debt free for over a decade - already deep in debt… can’t wait to have the money available to pay off my bills!

It was hard to turn off the Work Ethic…. I hate being dependent on others (financially and physically). However, I too have come to the conclusion that my time left is worth much more than the money I could be making. I have made an effort to become more involved in family / friends / hobbies, etc…

Unfortunately - my hobby at the moment seems to be visiting doctors 🤣😇

[carbide]

You are #1. The world will keep spinning with out you at the job.Your choice.

Best luck.

[Shorter]

My robotic surgery over 3 years ago was LIFE CHANGING and had a LOT to do with my early retirement. I went to Kansas City in April of this year to get my life back. The surgeon told my wife while I was in recovery that they had never seen what they found inside of me.

ADT and salvage radiation early last year was like a bump in the road. I am well over a year of living without testosterone. I have lost a considerable amount of strength, but it would not have affected me at the job I retired from. In my case, losing strength has been about the only real negative of living without testosterone. YMMV.

[OldChappy]

Well, I have a cushy office job so that may be different than you. But I did work 40 hours a week, umpired High School Softball and rehearsed and performed in a musical during radiation. My job was very gracious to allow me to leave (we have flex hours) I would get to work at 6:00 a.m. my wife would pick me up around 8:00 and we'd go to hospital and I'd get back around 10:00 a.m. and work until 4:00. Slept a lot on the weekends. And only had one day where I got home from work and called off the rehearsal and slept 12 hours straight.

[Survivor1965]

Been doing this for almost 10 years, sadly. I worked for 5 of them, thru 21 bags of chemo, Zytiga, cryoablasions, massive viagra, incontinence, the works.

I stopped working almost 4 years ago, after much deliberation, and dont know how I could have ever continued. Xtandi/Lupron has been tough after now 55 months.

It really is a personal decision, but if you have the means you could retire. The drug combo continues to be a greater and greater challenge mentally and physically. If you are like me you will need as much time just taking care of yourself and getting rest/excercise.

I remember the decision to retire a difficult one because its hard to undo but after I did it it became very obvious it was the right decision for me. I hope this helps, Johnny