I'm 75 and four years ago, upon my Dx, my oncologist reluctantly guessed I had 3-4 years. Thankfully, I've reacted great to Erleada and Lupron, with few side effects. My PSA gradually dropped from 67 to undetectable and has held there steady for three years.
Obviously, I've been grateful, but stupidly I haven't done much about focusing on QoL (or exercise), but I keep reading about folks trying to make the most of their remaining time....whether it's months or years (I'm looking at you Dockam ) I'm self-employed and have been saying that I like my work, it's kind of my identity, and I'll probably keep it up for the foreseeable future. Nothing has changed with the satisfaction from my work, but I've recently decided that I'm going to wind that down by the end of the year, and turn my attention to enjoying life....whatever that means.
We've traveled more than most, but our intention was to significantly ramp that up by now, but we've significantly slowed it down, partly due to the pandemic, partly to a few non-life threatening medical issues. Now, those issues are past and I feel like I'm just being lazy, especially when I compare myself to others here.
So, I'm hoping that there are some books out there, probably retirement-related, that offer great practical advice how to make that transition. Any recommendations?
Thanks.
Ron
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NorYug
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I am of course biased but I wrote a book “Dead Man Running” about my T4 m1n1 diagnosis and what I did (and am still doing after ). I am now 8.5 years since diagnosis when they gave me 2 years .
Hello: Ironically I was talking the other day to a friend of mine that retired from the HR department, of a large local manufacturing company. He told me how men who had worked all their lives talked to him about retiring. He would ask them what are you going to retire to? He said some would tell him that they were going to fish, play golf etc. He asked if they were going to do that 365 days out of the year. They soon found out that they needed something do. Like part time work, a plan to travel or whatever they could see themselves doing to keep themselves active. Those that did not look for something, did not last long.
I am saying all this, to say this: I do not know of a book, or anything, but you should have a plan on what you want to do. I am in the process of trying to figure this out myself. I will let you with this same question he asked me.
What are you retiring to? Not only do we have this beast to deal with, but just life in General to make sure we keep ourselves active.
I think you are wise to be thinking about how to do this before you retire.
There was a book suggestion on this site just recently that was about how we need to read about all the positive discoveries in life extension. I don't remember the title but I looked it up and read a bit of it on Amazon for free to see what it was like. It was about how the latest scientific discoveries are leading up to the point where we will live forever. For example, in the near future, nanoparticles will go about our bodies eliminating cancer cells. I read somewhere that if we can just hold out until 2030 we just might live forever.
Nope. Sorry. Ever hear about something called telomeres? These are degraded over time as our cells divide. They make for what I would describe as a built-in lifespan limitation. How many people do you know that are 150 years old? None. Unless someone can prevent telomeres from degrading over the years we will never live forever and who would really want to? Things are tough enough for me already and I am 'only' 73.
It appears the telomere picture is perhaps more complicated — here’s a summary quote from the article:
Long telomeres — DNA sequences at the end of chromosomes — have been linked to longevity. But there is a trade-off: a study of five families with a genetic predisposition for long telomeres found that they also had a higher risk of cancer. During the two-year study of 17 people, four died from cancer. Members of the families had a range of tumours, including melanoma and blood cancers. They were also at greater risk of clonal haematopoiesis, in which a more-than-normal number of blood cells are derived from a single clone.
I was afraid of that. OK, then at the risk of hijacking this thread, I post the text-based version of article here, but of course this will be missing links, images, etc:
The story, as often happens in science, sounded so appealing. Cells have a molecular clock that determines how long they live. If you can just stop the clock, cells can live indefinitely. And the same should go for people, who are, after all, made from cells. Stop the cell clocks and you can remain youthful.
The clocks come in the form of caps on the end of chromosomes — the long twisted strings of DNA carrying the cells’ genes. The caps on chromosomes, called telomeres, are chains of short, repeated segments of DNA. Every time a cell divides, its telomeres get a little shorter, until finally they get so short that the cell dies.
“Short telomeres were thought to be bad — people with premature aging syndromes had short telomeres — so, by analogy, long telomeres were thought to be good,” said Dr. Mary Armanios, professor of oncology at Johns Hopkins University School of Medicine and director of the Telomere Center at the medical school’s Sidney Kimmel Comprehensive Cancer Center. “And the longer the better.”
But, of course, nothing in biology is so simple. And a paper published Thursday in the New England Journal of Medicine, with results of a study that Dr. Armanios led, shows that the telomere story is no exception. While short telomeres do lead to health problems, long telomeres lead to health problems of their own. Far from extending life, long telomeres appear to cause cancer and a blood disorder known as CHIP, a condition that increases the risk of blood cancers and heart disease.
Dr. Elizabeth Blackburn, an emerita professor at the University of California, San Francisco, who shared a Nobel Prize for the discovery of an enzyme involved in making telomeres and who was not involved in the study, said it was a “beautiful paper” that went beyond correlations to show a direct link between long telomeres and disease. She added that the research “enlightens this whole trade-off.”
For Dr. Armanios, it is the culmination of work she began 20 years ago.
When scientists started studying telomeres, they observed that young people had longer ones than older people. When cells are grown in the lab, their telomeres act as sort of a ticking clock, determining how long they have to live.
Soon, telomeres were hailed as a secret to aging — companies advertised that they could tell your biological age by measuring the length of your telomeres. Others said that you could extend your life by preserving your telomeres with supplements.
But Dr. Armanios and other researchers had noticed that telomere lengths seemed constrained to a narrow range, indicating there is a price to pay for very long or very short telomeres.
Population studies by several groups seemed to support that idea. They found correlations — not a cause and effect — with increased disease risks at either end of the normal telomere spectrum.
Those with shorter than average telomeres appeared to have an increased risk of immune system problems and a variety of degenerative diseases, as well as pulmonary fibrosis, a lung disease. Those with longer than average telomeres appeared to have a modestly increased risk of cancer.
There were, though, some puzzlements.
“Some organisms have crazy long telomeres, like mice,” said Dr. Benjamin Ebert, chairman of medical oncology at the Dana-Farber Cancer Institute. “And mice don’t live that long.”
Dr. Armanios, as a human geneticist, thought the way to get answers was to study humans. “There are things you just can’t infer from studying cells,” she said.
She suspected, she said, that “you just can’t elongate telomeres without a price,” and began looking for people with very long telomeres to ask what that price might be.
She decided to look for people with a common genetic mutation, POT1, that can result in long telomeres. It was known to increase cancer risk but most researchers thought it was for reasons other than lengthening telomeres.
She ended up with 17 people from five families. They ranged in age from 7 to 83 and had extraordinarily long telomeres.
They also had tumors, ranging from benign, like goiters and uterine fibroids, to malignant, like those from melanoma and blood cancers. During the two-year study, four patients died of a variety of cancers.
Harriet Brown, 73, of Frederick, Md., is one of the study participants with very long telomeres. She has had benign tumors called paragangliomas in her neck and throat, thyroid cancer and two melanomas. She also has CHIP, the blood disorder associated with heart disease and blood cancers.
She has frequent scans and exams but, she said, “there is really not much I can do at this point,” because there is no way to prevent more tumors from developing.
The effects of long telomeres on people like Ms. Brown make perfect sense, said Dr. Norman Sharpless, professor of cancer policy and innovation at the University of North Carolina School of Medicine and a former director of the National Cancer Institute.
“It’s not that long telomeres make cells grow,” he said. “It’s that they don’t have the brakes to make them stop growing.” And because the telomeres of people with POT1 mutations do not grow shorter with each cell division, the cells hang around, dividing regularly. The longer they are dividing in the body, the more time they have to accumulate random mutations, some of which prompt tumor growth.
That’s especially true in blood, where cells are constantly being produced. POT1 mutations in some of these blood cells can give them time to accumulate other mutations that give them a selective advantage in growth. Soon some of these mutated blood cells pretty much take over a person’s bone marrow. The result is CHIP.
That is a new view of CHIP. The thought had been that because people with CHIP were at increased risk for blood cancer, that CHIP itself was causing cancer.
Instead, Dr. Armanios said, it’s that long telomeres are both creating CHIP and, independently, giving cells time to develop cancer-causing mutations.
“Aging biology is a lot more complicated than we’d hoped,” Dr. Sharpless said.
Or, as Dr. Blackburn observed: Long telomeres are not the secret to eternal youth.
I was diagnosed at 67 and had just retired from teaching in a Trade School.Had taught for nine years. Before that retired from management in manufacturing.
After teaching I worked as a Code Officer and Building Inspector. Retired from that after a few more years.
Now, at 75, I am a Consultant for customers in the Residential Solar market.
Keep the body and mind involved and live your life: it's the only one you have!
I suggest you follow through on your plan to shift gears into high-enjoyment mode…..and YOU write the book! Your post makes for a good intro…..
I’d buy it!!!
Maybe even solicit stories from others on this page and make it a compilation. I’ll do my part and capture the highlights of the nine-days we just spent in a motorhome with half our kids and their kids….wonderful, raucous, fulfilling memories!
Awesome suggestion about the book and my employment.
I feel exhausted 99% of the days. I don't sleep and feel stress daily.. One reason I have not gone to work. I m afraid I will be too tired to function. You are so wise and I aooreciate your thoughts and advise, Thank you so much 💜
I was diagnosed with T4N0M0 Gleason 8 PCa in 2009. Part of my personal therapy was writing a book, which was published by Demos Health in 2012. (It's still on Amazon. Just search "pynn prostate" and it will come up.) While I didn't address QoL head on, I wrote about emotions, introspection, relationships, and how PCa gave me a real appreciation of life's all-important spiritual dimension. It's been almost 15 years since that Dx and I'm still here, albeit with a pretty altered life. A key has been staying engaged with life: I'm self -employed and have no plans to quit even though I'm now 76. Also, family, being active at my church, and my landscape photography hobby (https//:craigshots.com) keep me busy. Unfortunately, the radiation led to a Dx of stage II rectal cancer in late 2022. But I'll get through that, too. But every day is a gift and I get out of bed each morning appreciating that fact.
Greetings. I know we all have a cancer tale to tell so I won’t repeat mine here but I truly believe that I’m doing as well as I am is due to the fact that I stay fairly active for an old coot and I volunteer. My physical activity is pickleball ( I’m not real good but I hold my own 😀) or brisk walking 5 days a week. Whatever gets you moving is of huge benefit. But volunteering gives SO much meaning to my life and the same is true for all I know who do likewise. Believe me when I say that there are volunteer opportunities in every direction you look. And you have a lifetime of skills and intelligence that could benefit others. It can change the way you see the world. Two days a week, during the school year, I mentor elementary kids who need a male presence in their lives by reading with them. I was one of those fatherless kids myself so I can bond with them in a flash. It gives me pure joy to become their friend. It’s like being a favorite grandpa to them. My wife and I also spend a couple of hours each week at a church (not ours) that needs a helping hand with their clothing ministry for those who need it. We get a lot of pleasure from knowing we’re doing something for those less fortunate. Believe me, you can do something that will benefit others and make you feel better about yourself at the same time. Go do it, bro! And good luck on your journey!
I also enjoy pickleball, but it's hard on my shoulder. I'm trying to give the shoulder a good, long rest to see if that helps. I love the idea of volunteering, maybe even something along the lines of mentoring younger boys. I'd toyed with the idea of Big Brother, but Favorite Grandfather makes more sense.
NorTug, you said, " I'm self-employed and have been saying that I like my work, it's kind of my identity..." I can certainly identify that. I was self-employed for the last 25 years of my career as an engineer/researcher. Now that I'm 80 and finally retired (it was hard to decline business opportunities), I realize how much of my self-esteem was associated with my work.
I was diagnosed with Stage 4 PCa 4.5 years ago, which was just as I was winding down work and planning to start have some fun doing other things. Originally, I envisioned those "other things" as involving things like boats, cars, and extensive travel. In fact, I'm doing none of those things. Perhaps I'm using my PCa as an excuse. But other than the fact that 4.5 years of ADT side effects have slowed me down a bit, that's not a legitimate excuse. All that said, I'm reasonably happy in my retirement, even though I'm no longer getting the "That's a nice piece of work, Charles" attaboys , and I'm dealing with an uncurable cancer.
I've been pretty lucky with only minor side effects, but I often wonder if I'm underestimating them. I'm 74 and slowing down considerably.....physically and mentally. I tend to blame the aging rather than the ADT, but I might have it wrong.
I've thought about the BAT fellows are talking about here where they significantly increase your testosterone in spurts, or the fellows who just take an ADT vacation. Even though my PSA has been undetectable for three years (thankfully), my MO is very averse to taking a break, especially since I don't have major side effects.
It sounds like we share some of the same issues. Thanks for the response.
I too loved my job but retirement has been such a blessing for me. I enjoy everyday as if it were my last and this disease has really taught me how to live and not sweat the small things. I dedicate my time to staying as healthy as possible lots of time to go to the gym. One of the best things is my time is my own and I realize now that no matter how much I loved my job it still came with stress. I know eat, sleep and feel better than I have in years and I feel fortunate that I am in a good financial position that I can enjoy my retirement without worry. Good luck to whatever you decide to do but remember that old adage, no one ever says I wish I spent more time at office/work....
Rogerandme, thanks for the encouraging words. Really. I tend to be someone who doesn't like change, which is probably one of the reasons i continue working. I do like the idea of sleeping and feeling better....I hadn't thought of that.
I love being retired because now I pretty much do what I want to ( with the exception of remaining compliant with my Med visits - high maintenance but I'm worth it ) Other than that - if I am doing something that I am not enjoying or liking - I stop and do something else. Little everyday things - big life stuff - 75 birthday celebration - trip to the Northwest and checking things off the bucket list the list is still long. That's what I call QoL
my small two cents advice. Don’t try to plan it all out in advance. Once you retire, loaf around, read, take long walks and see where life takes you. When I retired everyone wanted me to decide what to do next. I resisted and am happier for it. Not all who wander are lost.
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) I'm self-employed and have been saying that I like my work, it's kind of my identity, and I'll probably keep it up for the foreseeable future. Nothing has changed with the satisfaction from my work, but I've recently decided that I'm going to wind that down by the end of the year, and turn my attention to enjoying life....whatever that means. 
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