I am a veteran Realtor, over 47 years of full time self-employment as a Realtor. Because of this prostate cancer nonsense and it's subsequent treatment, I am finding myself more and more fatigued, overwhelming so. I always kept myself in good physical condition because of my life's career choice. I always went to specialists for health concerns. I thought I had chosen the best of the best as far as urologists. He was the only one to offer Greenlight laser surgery when I was battling BPH about 20 years ago. His problem was, despite my many, many visits to him over the years, he was not paying attention to my rising PSA and I was to stupid to relate to it despite my attention to other health concerns. My PSA kept rising and he said it was due to age. I trusted his judgement and now paying the ultimate price for it. When my PSA went into the 130+ range, he set me up for a prostate biopsy which resulted in the diagnosis of advanced prostate cancer. I have been dealing with it ever since getting treatments once a month at Yale. It would be okay if I felt decent but over the past few months, I have been dealing with fatigue and it sucks big time. I cannot exercise because I need a hip replacement due to avascular necrosis of my left hip. Supposedly, I am waiting to get it scheduled by a Yale orthopedic surgeon. I have been walking with difficulty with a cane for far too many years now. In addition, before chemotherapy was administered about 2 years ago, I had 10 shots of radiation to my hip for the bone met that was plaguing me. Well, that supposedly left me with lymph-edema, that starts just below my left knee and goes into my pelvic area. It is troublesome but I deal with it. I went to a vein surgeon this year, 2022, and he put a metal stent in my left illiac vein which was compressed or collapsed. It seemed to help a bit. I use a leg compression sleeve when I need it to keep things moving which seems to help but does not cure. So that's my story, I have good days and some not so good. Although there was cancer in my family, none of my relatives that I knew of had prostate cancer. Along with an incompetent urologist and my thoughts about no one in my family coming down with this horrible disease, that contributed to my being afflicted by it. Oh but to turn back the clock and know what I know now (sigh). 🥵
Inability to work is frustrating me. - Advanced Prostate...
Inability to work is frustrating me.
Goodness gracious you have been through so much already. My suggestion is to try and be kind and gentle with yourself. You've lost work and other activities that you loved doing; try to not expect more of yourself than you can now muster. Take care of yourself.
Lyubov,
Many, many thanks for reaching out to me when I imagine you have your own cross to bear. It is much appreciated, good advise. Sometimes we get lost in our own mind.
👍
I am so sorry to read your story. Cancer is so cruel, it takes from us the life that we thought that we would live and we need to grieve that loss; the loss is real and painful.
Then we need to pick ourselves up and come to terms with the new life in front of us, not of our choosing that we need to navigate and we may need help to do this. For an independent person like yourself that sometimes isn’t easy, especially when the trust that you placed before appears misplaced (the kindest interpretation). I doubt that there’s anyone on this site who doesn’t understand your pain, we all share in it to some extent.
Sharing here can be helpful and healing though sometimes something more can be needed to help move forward.
Going to a grief counsellor isn’t a sign of weakness, it’s a sign of growth from pain.
I hope that you can move forward, there’s plenty of people here who help enormously, I’ve been on the receiving end of that help over the past few years and am very grateful to many on here.
Take good care of your self.
Hugh
Hugh,
Thank you for taking the time to comment on my personal story. Hearing from others like yourself is very helpful, also comforting. I appreciate you.
Ron
I'm glad Hugh commented. I have shared his comment that I first heard from him about a year ago how the life we thought we would have was taken away.
For me that explained much of the emotion I was having since diagnosis.
Not only did I alone have a vision of my future but my wife as well. We had a shared vision.
It was a hard pill to swallow that such a momentous change had taken place.
I feel for your situation. I know how you feel about not being able to work at something you like. It’s frustrating. I couldn’t do it full-time on ADT due to brain fog. After ADT I returned to work full-time and feel very lucky to do so. A friend’s son just lost his life to bone cancer at the age of 20. It was another wake up that this disease can take life away. Be glad you made it to 79. I always felt like you won if you make it to 80. Be kind to yourself and take the most of what life offers.
Timotur,
You know, you are right. Physically I am 79 years old but mentally I am far younger. My father died at 69 (colon cancer), father-in-law 66 (prostate cancer), brother died at 80, one sister died at 93, 2 others died in their 70's (both smokers). So, you are right, I have nothing to complain about except my urologist who didn't do a proper job. if he had, he may have caught this much earlier. But it is what it is so like all of us, we have to deal with it. Thank you for your kind words and your advice. I appreciated your taking the time to reach out.
Ron
Same here, my GP didn’t screen for PSA from 2010-18, due to the USPSTF recommendation to not screen, and I got a nasty surprise when I randomly checked it myself and got a 23 at the age of 64. I knew life would never be the same when I saw that. It was a big shock because no one in my family had cancer, and I was quite active and healthy.
May I ask.....what were your PSAs before your urologist finally advised a biopsy??? He blamed high PSAs on BPH...just guessing? At Kaiser, high PSA is >6.5 once men hit 70...in 60s, it's 4.5.... but many Docs use 3.0 at all ages.
Dear Maley2711,
PSA results were rising, last I knew PSA test was 12+ but he still didn't advise me, he blamed it on me getting older. It was not until a PSA result came in over 130+ that he took action. By then, I instinctively knew it was too late. My bad luck was trusting the wrong urologist. Very unfortunate because I had been going to him for 20+ years. My awakening was too late therefore I blame myself too for being unaware. I knew of no family member who had to deal with prostate cancer, that I knew of anyway. So, it just never occurred to me. Total ignorance on my part. Thank you for commenting.
Ron
Well please don't blame yourself. I didnt even get a physical for decades.I felt like I and only I was responsible for making a terrible mess out of my loved ones lives. If only etc.
Try reading the bio's of people here. It helped me understand that even with due diligence this damn disease can strike. It can come on slow then take off to the races. It can come on fast and then slow. Come on fast and stay fast.
We are dealing with a mutation more advanced than cockroach mutations.
You could have had surgery when PSA was low and then a re-occurrence later with metastasis and be where you are today. So many possible outcomes if you look back. Please don't blame yourself.
strikes me as malpractice...but maybe standards are very low for MDs??
Can you at least do weights on your upper body ? Lifting weights can be incredible helpful in preventing fatigue associated with ADT. Numerous men will attest to that. Try a trainer if you can afford. I hate every session but I feel only minor side affects of no T.
Schwah
Dear Schwah,
Thanks for the advice. I am going to take your advice. Prior to, I had worked out in a gym 5 days a week, cardio and lifting. I know the value of exercise so thanks for sharing. Anything to get rid of the fatigue.
Ron
It’s a vicious cycle. Fatigue leads to no exercise and no exercise leads to fatigue. My MO who has almost 3,000 PC patients in his clinic was very clear. Men who do weight training. While in ADT do pretty well. Those who don’t, don’t. He said he could tell when they came in. It’s really hard to get started and I still hate it today. But I only miss about 3-4 days a year. No excuses.
Schwah.
Instead of weights, any thoughts about walking uphill every day, and perhaps those stretch bands for arms? Currently "just" 50 minutes walking per day. Age 74.
My wife uses a 5" stepper?
I’ve read a lot about this subject. While any type of exercise is beneficial, weight resistant exercises (including stretch bands of course) while on ADT is the most beneficial by far. This is because ADT and the lack of T causes muscles to deteriorate and atrophy which in turn leads to fatigue.
Steve S
Thanks Steve !! Wouldn't walking uphill, carrying my 190+ lbs, be resistance exercise/ same with stepper...lifting weight???
I suppose so but mostly on one section of your legs. My 65 minute work out eotks shoulders, biceps , triceps , three different leg weights , stomach , chest etc etc. At least 15-20 different resistance exercises. All of these muscles atrophy with no weight lifting and no T. That muscle atrophy is what exacerbates the fatigue. By the way my bone density increased enough to avoid the bone strengthening drugs.
Schwah
Did you uncover any studies showing what works and what doesn't re various forms of exercise? VERY difficult to envision myself doing all that.....no room for weights at home, but alternative forms of exercise at home I might motivate my self to do. Have never lifted weights, and at 74 and questionnable joints, not sure strenuous weightlifting would be a sensible thing to start? Actually, definitely bad knee...can't jog anymore, and troublesome elbow if I'm not careful.
Perhaps I could do a lot of repetitions of some manageable resistance or weight, but not ,what is it called, deadlifting of max possible weight? I have a degenerative spine per my DEXA scan, and a high fracture risk for a man.....7 % hip and 13% total major fracture risk over next 10 years.... MUCH worse than my wife 8 years younger!!
Start with 3 or 5 pound weights at home. Lots of exercises you can do with light weights. Never too late to start. Lots of info online or hire a trainer one time to set you up.
Lots of Utube videos like these for seniors to get started. youtu.be/Wa8Fk8TaXPk
Quit making excuses my friend. Check with your dr first and then get going. You will not regret it.
Schwah
Thanks! Any idea how much weight you need to be able to do for how many reps in order to achieve a significant reduction in ADT side effects ???
What do you think about this " kettlebell " program?
You’ve not had the best care it’s true, but put that behind you now. Simple but not easy I know.
Get the hip replacement as soon as possible so you can walk, nothing is more important. Lift weights with whatever parts of the body you can. It brings great relief from the fatigue.
London441,
I am waiting to get on the schedule. I had a specialized CT scan of my left hip and pelvic area last June 15th. I need to follow up and see what taking so long. I had been laying off because of the fatigue. Thanks for your valuable comments, I truly appreciate them.
Ron
I find exercise gets rid of the fatigue. I had to take 5 days off and I started to feel this weird fatigue. I went for a bike ride and it disappeared. I wonder if you could do the bicycle or rowing machine with your hip. Another though is swimming laps.
My eBike has been a true game changer for me. When I used to fall victim of either fatigue, depression or what my wife termed The Dreaded Lipton Fink, I’d simply jump on my eBike for a spin. I now do at least 25 miles a day along with a half hour is exercise. When I’m cruising the neighborhood and local bike trails I feel like a kid again. Lots and lots f smiles per mile!
Dear3putt,
You know, I previously thought about an Ebike but that's as far as it got. Because you brought it to the forefront, I am going to follow up on it. Many thanks for the suggestion.
Ron
LMAO! I really need to wear my glasses before I start typing along. Glad you were able to decipher!
My husband bought me an e-bike a couple of year ago. It has kept me biking, I could definitely not get up our steep driveway with my old mountain bikes. There are many bikes out there and what you need depends on the terrain you want to traverse. Mine works quite well for my 3 mile daily mountain run and would work equally well on the flats. Hubby bought one for himself, it has 25 miles on it, mine has almost 1000.
I am not pushing it and there are both cheaper and fancier models but I do like my Motobecane which is of course made in China. No problems other than some loose screws and needing to replace brake pads a few times due to the steep decent on a gravel driveway.
Go get one, you will not regret it. A friend who has been an invertebrate biker his whole life bought the model one step above mine ,and says it is his favorite bike ever (he is no longer young) I tried it and was hooked but did not buy one. Fortunately the hubby did. They make you feel young again.
Dear Grandpa4,
Truly excellent advise. I am going to look into each of your suggestions today, especially the swimming advice. That might be just the ticket. Thank you.
Ron
Sounds familiar, I was dx at age 54, I ended up applying for SSA disability after toughing out treatment and working for the first two years after dx. Fortunately my employer also had a LTD plan. I qualified for both being stage 4 and glad I retired. It has allowed me to focus on my health and well being as well as what’s important in life. I don’t miss work a bit. I attended the funeral of a friend of mine a few years ago who passed away at an early age after a long battle with brain cancer, during the eulogies not one of his family members talked about what a good worker he was, only the special time spent together. That is something that has really stuck with me.
Ed
Dear EdBar,
Dx at age 54? Then I definitely should not be complaining at 79. I was dx'd at 75. Problem for me is I truly love what I do. It's not work to me. I loved it from Day 1 & it's 47 years later. Plus at my age, I have been collecting SS since turning 66.5. So I doubt they would give me SSA. However, sounds like you made the RIGHT choice in the action you took and I truly do appreciate your sharing your story with me. I just need to get rid of this fatigue and have gotten excellent suggestions for doing so which I am going to put into action today! To take the time to reflect on my situation by you is truly precious to me and I do so appreciate your doing so.
Listen, you are 79. You love what you do. But, “No Man Ever said…..gosh I wish I had spent more time at work, when lying on their Death Bed !!” Its the people you probably enjoy, not the work. Show a person 12 homes, and they buy from a Realtor at an Open House cannot feel good?We all think the world revolves around us, but when we are gone, nothing changes. The World keeps moving.
So, my advice, at 79 yrs of life, Retire! You’ve saved a few $bucks$. Sit down and write a bucket list of 10 things you will do before you are gone. Time is clicking. Travel to visit childhood friends or favorite Relatives. Pamper yourself. Upgrade to a nicer room. Spend a little extra for a nice restaurant. “The problem with time, is we think we have lots of it”.
My penny in the hat, Mike Retired at 66.
No regrets. Too hard to be extra sharp with all this Pharmacology in my veins. My best to you and yours
Dear Spyder54,
You are right on with your thoughts. I never wanted to retire. I have a nice family but everyone in life has extenuating circumstances and every one is different, their goals, aspirations, personal situation. My situation calls for some money to keep flowing into my business account and the only way I know how to make that happen is to continue to work. If I can overcome the fatigue I find myself in, I will be right back at it. Luckily I have a business partner who depends on me and picks up the slack. I have lots and lots of past clients so I don't want to give up that source of business. Helping people attain the dream of home ownership has always been a source of tremendous satisfaction for me so I guess I am hooked on that feeling. Thanks for your thoughts, they are very much appreciated and I hope you yourself are doing well at this time and well into the future.
Ron
I have always been very active working more than anyone else and generally enjoying it. ADT has changed all that but as long as I can keep exercising I can function at a lower level. It sure sounds like you have more complicating factors to deal with but the same principle applies. Keep as active as you can and don't give up but at the same time you need to accept that you are not as strong as you would like to be and that you likely never will.
As far as I know realtors have a wide range of things they need to do. Maybe you can concentrate on the less physically demanding and let others do those things. Use your 45 years of experience more than your worn out body. I can say this easily but it is hard for me as well to accept my current condition.
One thing I plan to do soon is to have a guided psychedelic experience to help straighten out my concerns and outlook on life and death. In the mean time I just need to slow down a little and let others do the heavy lifting. I am building a massive solar system and that involves quite a bit of lifting. Unfortunately there is no one in the remote area i live in to help who can be trusted. This is my last large project (he said).
Good luck with whatever comes you way and with the ability to have the best attitude possible.
Dear Spencoid,
You sound like you have the right attitude and I applaud your tenacity. Best of luck with your projects both personal health wise and construction-wise. I know you will see both to completion. Many thanks for taking the time to comment, I very much appreciate it.
Ron
Mine got out of the capsule during Covid so I know how you feel. Don't look back just make the best of the time you have left on the planet.I am currently suffering from a knee problem that does not allow any lower body workout so I am concentrating on upper body till it heals.
Exercise is the path to our best outcome regardless of the stage and condition we are in.
Be Well and seize the day .
Dear Scout4answers,
I appreciate that good advice. Funny thing is I had a partial knee replacement on my left knee back in 2015 that I had operated on. The operation was wonderfully successful, so much so I was able to get back in the gym. Life was good until the latter end of 2018 when the stuff hit the fan. However, like you all, I have been dealing with it as best I can. I get ADT treatments once a month at Yale. All my blood work seems to be good. The only thing I complain about is fatigue and sometimes, not feeling very well. I am happy for all the advice from all of you who are undergoing all the ramifications of this terrible disease. I is good to share and I appreciate each and every one of you and will all of us, me included, the best. Maybe they will develop a miracle cure. Wouldn't that be something!
A cure is coming , not sure when but sense it will come out of left field.Science is moving rapidly.
Scandalous that a urologist could ascribe an alarming growth in PSA to 'old age'. What a damned incompetent doctor. Stories like this make me angry. Don't blame yourself. If you made a mistake it was in trusting a so-called professional.
Dear WSOPeddie,
Sorry I brought it up but it's exactly what happened. Even when he was doing the biopsy, he commented that his practice "did not do many prostate biopsies" OMG. I should have sued him but now the statute of limitations has passed, it's only 2 years when I live. I was more worried about me and how I was going to battle it at the time. Thanks for commenting.
Ron
My brother goes to a female general practitioner and it never occurred to her to have his PSA checked when he had his routine blood tests, that is until he had trouble urinating. By that time he had high risk prostate cancer and a PSA of about 115. The doctor apologized for not checking his PSA routinely. I think the moral of the story is we can't blindly trust doctors to always do the right thing, but we have to try and be as informed and proactive as possible to safeguard our own health. It would help if there was half as much publicity for prostate cancer and PSA screening for it as there is for breast cancer awareness.
Dear Cancerfox,
You are so right on with your comments. I beat myself up mentally for being such an ostrich with my head in the sand regarding the PSA testing and the increasing levels. Funny, I was not that way with any other medical issue. I was always on top of everything. I was not a guy who avoided doctors at all. I went to my former urologist for 20 years. He was ahead of his time with offering Greenlight Laser surgery for correction of BPH. Apparently he was not so much up on PSA screening. Or he was listening to the medical jerks who downplayed the importance of PSA screening if you remember that. I do not think they ever changed anything regarding it. Thanks for commenting.
Ron
My husband too, for over two years my husband went back and forth to his uroligist and medical doctor complaining of urinary issues and a strange pain in his hip. Instead of checking his PSA and doing some scans, he operated on him with a urolift and when that didn’t work gave him a turps operation. When he finally ordered scans and the scans showed widespread cancer, when questioned, he said “these things happen “. Oh, also waited two more months to give us the results of the tests. I wish my husband asked more questions. Now we are different, both of us, not as trusting!
Don't be so hard on yourself. I probably wouldn't have watched my PSA as closely as I did if my brother hadn't gotten prostate cancer first. That also alerted my doctors to the possibility that I would be next. Even then, I was getting up to go to the bathroom several times a night and mentioned it to my family doctor, but since my PSA at the time was about 4 it was assumed that I probably was just getting an enlarged prostate and he gave me a prescription for tamsulosine (which worked), when it was likely a sign that prostate cancer was underway. Then my PSA finally jumped to 7.5, a biopsy was ordered by the urologist, and the real culprit (PC) was identified. Medicine still isn't an exact science, and people are fallible, so we just need to do the best we can with the information and medical tools available to us. I hope you see some improvement in your situation........hang in there!
My PSA was only 2.7 when a suspicious DRE got me sent to a urologist for a biopsy. Gleason 8.
I had two urologists in my PCA history & gave them both the flick & am happy with the treatment the MO gives me now.Brain fog, muscle weakness, fatigue are all part & parcel of ADT I have found. But at 73yrs now my advice is keep at the gym & keep busy & take time out for yourself. Life is a precious gift. ENJOY!
Your post sparked a lot of response. Much good perspective. Adding mine: Don't be so invested in your past work identity as "Realtor Emeritus". That is something you did, and apparently was very good at doing. But it is not what you are.
Sometimes a severe life-threatening disease arrives to force us to transcend that and consider what our lives are really about, in the short time we are here. I gave up my life-long profession as a practicing physician when diagnosed with advanced prostate cancer. And began asking myself what is the highest meaning and fulfillment for me in this life?
Not just doing more of the same for some more years, as valuable as that may have seemed. Is there not something more? Something more complete and fulfilling? So that when that last breath comes, I can say "Yes! I have done that which is the most important role for me to fulfill. I am complete and happy."
Cancer may have the gift of forcing us to stop pursuing our established routine, however good we have been in that role. Is it enough? What more do you have to offer to others in life, to family and friends and strangers? Other than another 100 or more real estate transactions?
In the meantime, get that worn out knee replaced and rehabilitate it and your entire fitness and your outlook in life to be your very best for this coming phase. (That you cannot even phathom yet.) Paul
Ugh...I'm so sorry RE. So many here can feel these feels. We are finally flipping that switch to close up our shop. This wasn't the plan but these last few years have been hard on my husband. We have an accounting practice so it hasn't been physical labor but sitting for hours also takes it's toll. We've cut back our workload but to cut back any more we'd be breaking even. Working has been a good distraction these last 3 years. Concerned about filling our time with something constructive.
I'm hoping your hip surgery happens soon and you're able to find that healthy balance. And your good days outnumber your not so good.
I wish I had quit earlier.
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