My father was diagnosed with advanced prostate cancer four years ago. Initially, he underwent radiation for a few spots on his ribs and immediately began ADT/Xtandi treatment for two years. His PSA dropped to 0.001, prompting his medical oncologist to recommend a medication vacation. For two years, he had PSA tests every three months, and everything seemed stable. However, recently his PSA jumped to 0.4, and a scan detected one spot on his rib. He has an appointment with his medical oncologist in March and will receive radiation for that spot soon.
This summarizes my father's journey since his diagnosis. I'm concerned about how much time he has left, as I want to plan for several important occasions and I'm afraid he won't be around to attend them. I would appreciate any insights or advice you can offer. Thank you.
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godhelpus
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That is fantastic but I always wonder when I read this what is meant by “diagnosed”. (Not that it’s any of my business.) Do you mean prostate cancer diagnosed, or metastatic cancer diagnosed? Being in the latter category I’m always curious.
I was first diagnosed with prostate cancer in early May of 2016, by time of surgery in late June I was metastatic. My father had died a year earlier from this cancer so I was testing every 6 months and caught early
Well it sounds like if his therapy was working before it can work again. There are lots of guys that do what your dad is doing. Intermittent therapy interspersed with radiation if safe to do so, can keep a guy going for quite a while. Your dad still has cancer but it is considered hormone sensitive.
Things get more dangerous when the hormones stop working. That is called castrate resistant. It doesn’t sound like he is there yet. It can be years before he gets to that state, or it can be months.
If it is one thing that I have after almost 18 years of playing this game, it is a story or perhaps many stories. So Many chapters. What I am about to say may seem easy from the perspective of undetectable PSA and clear scans these past 10 years. I assure you that at the time there was nothing easy about it.
Letting go is a transition. It requires releasing perceived control over your life. Much like a 12 step program it requires giving that control over to a higher power. Control really is an illusion. We never had it in the first place. We are men however and many of us try to assert control over every aspect of our lives. We have a plan for what our lives are going to be. Then along comes cancer to relieve us of this illusion.
When I got the news at 42 I was scared $&!/less. I am 60 now. Still terminal!! Aren’t we all? I mean seriously…. It comes down to perspective doesn’t it? If I had been born 100 years earlier my life expectancy would have been much shorter. I may not have lived long enough to develop cancer. At least I didn’t get cancer as a child like some of these poor little kids at St. Jude.
Acceptance that we are not in control is the very first step of the transition. Once you have accepted your lack of control it becomes easier to be thankful for every single moment.
Maybe this is a form of wisdom or maybe it is just B.S. I don’t know. I just know that once I realized this disease might end my life and accepted it, it became a lot easier to live every moment of my life to the fullest. I became a better husband, a better father, better friend, and quite honestly a better man. Even in the depths of this miserable disease, there are blessings if we seek them.
We all do what we can on this journey. Keep on trucking along for as long as we can. Do what we can to be around as long as possible for our loved ones. No one knows how long that is. Never thought I would say a day at a time but I do now and ever since being diagnosed in 2019. Love, support, great sources like this one has really helped out. Give you dad a hug and just be there for him. Don't worry about the things you can't control tomorrow, because you lose the peace you have today.
gave me one and a half to two and a half years. that was 7 years ago. too many bone mets to count. planning on a 7 day mexico cruise in Dec. might not make it that long, but think I will. 0.2 psa rising every 3 months to 0.3, now 0.4. what, me worry. just a tiny bit. after 8 rounds chemo started xtandi, with lupron and/or eligard. think your dad would just love to be invited.
If you are planning something 5 or 10 years ahead then you should worry (as he might, as we say in England, fall under a bus in that time). Otherwise especially after COVID you are worrying unnecessarily. Most people would say plan your first big event and then after it plan the next one. Don't be too greedy. As far as your question, the fact medication was stopped to be restarted at a later date with radiation to the spots is very optimistic. I was diagnosed with extensive bone metastases in March 2021. PSA has never got below 30. Still going although castrate resistant now and treatment to date has always been palliative. From my research doctors can't, despite statistics, estimate how long anyone will live. Worry more about is he active and without pain. The treatment now keeps us going pretty well until the cancer finally wins and then we deteriorate rapidly. I.e. we can't get out of bed for even half the day because of the cancer Only if we are that bad can the doctors tell we probably have less than 3 months to go.Who knows what tomorrow will bring. Enjoy your planning whether or not he makes the events themselves.
I'm reading this book, "How Not To Die", by Michael Greger, MD. (2015). It gives me the feeling that we can prolong the ultimate indefinitely by proper diet and exercise. Of course, with advanced PC we need to fight the metastases. I was diagnosed at age 62 in 2008, sixteen years ago, and am 78 now. He needs to get back on ADT, (eventually), and fight his rib lesion. Life expectancy depends on a lot of factors.
Great book !! I'm in the process of converting to plant based, and use his book as a reference for what to eat, and how to prepare. Very easy to read, unlike some other books out there. I've found restaurants are really a struggle, as the American diet is based on meat and chicken. Very few plant based offerings, unless you find a vegan or a specialty restaurant.
Only god truly knows that answer. Honestly, we never even asked that question to my husband’s doctor. How many times do we hear stories… they were given six months to live and five years later, they’re still here. One thing you learn from a diagnosis like this is to seize the day, but try not to get to lost in how much time someone has left. That can be a dangerous hole that can be hard to crawl out of. Wishing good health to your father and a future filled with many great moments.
I was dx with metastatic, Gleason 9 prostate cancer almost 10 years ago, it’ll be 10 years next month. They originally gave me maybe 3-5 years. I hope to be around for quite a while longer, God willing. I became castrate resistant about 2 years ago and since then I’ve had spots on two different ribs radiated. Each time my PSA (which is still extremely low) fell back to almost undetectable. I’ll keep playing whack a mole as long as I can, after that there’s still other treatments available.
He was vital, optimistic, determined to KEEP LIVING - and NEVER talked about how much time he had left.
He had spots on his ribs, and spine.
Did MANY medications, no chemo - but finally did several intense doses of radiation to hip, spine, and ribs.
He always talked about things to look forward to.
And, constantly planned for the next trip, or concert, and even bought a condo in Florida last year in March. My parents gutted and redid the condo - and it was beautiful.
Each of us 3 kids took turns going to Florida to help with setting up this new beautiful place.
My father was a retired architect. But never "retired" from anything.
He had an amazing 88th birthday party. Took on a new job 6 months prior, with the drawings of the renovations of The Somerset Collection - a high-end retail center in Troy Michigan where we live.
And kept on dreaming of what was next.
His PSA was rising for over a year.
He finally stopped all meds after the radiation.
Had a spontaneous hip fracture ( that didn't hurt) but put him on a walker. He was determined to get off of that walker and golf.
He DID swing golf clubs in the basement ( he'd go down the steps on his butt, and pull himself up, one step at a time, sitting on each step, with the walker in one hand - determined to get strong enough to not need it)
He did push ups on the counter, and put that walker into his Corvette! to take my mom to dinner - even up til 2 weeks before he passed this past August - peacefully at home in his sleep.
LOOK FORWARD TO YOUR PLANS.
And talk about the excitement of them with your dad.
Keep focused on his mindset and try to talk about things your dad loves, not the disease.
My dad's demeanor turned so sad and withdrawn for a moment if anyone asked about his cancer. He would simply change the subject onto something that everyone was happy to hear about.
We kept all medical conversations, options, and discussions between he, myself and my mom.
And, my dad thankfully for 4 years, was open to taking medical marijuana gummies, instead of pain meds or anti-nausea meds.
They REALLY helped, and in Michigan, they were easy to get.
we gave him 1/2 doses of CBN/CBD/THC combos' so he never felt high - they were a Godsend!
Know that you are not alone.
I'm sending you prayers right now, and wishing that every moment you have with your dad is memorable.
I truly second the 1/2 doses of CBN/CBD/THC combos. They perform well for me. Easy to get here in Colorado. I am getting my medical marijuana card today, Feb. 23, 24.
Are these three separate pills or gummies, or one pill that contains all three. I don’t know much about this. What would I ask for is I wanted my husband to try (if ever needed).
The gummies recommended to me by the dispensary are one gummy that includes equal amounts of CBN, CBD, and THC. The total in the box is 100 mg of each. Each gummy has one twentieth or 5 mg of each. Of that, I started at one-fourth of a gummy, or 1.25 mg each. This amount gave me considerable relief from sore joints, helped me sleep, and raised my depression level some. I was still loopy the next morning, but a walk with the dog and two cups of coffee cleared up. Still, during the evening and night my cognition and thinking went to near zero. I hate that as an author.
This is why I enjoy this website and all the great people we have here. Absolutely love all the response you have gotten. Keep on keeping on all.Love and the best wishes to everyone
FYI, I was diagnosed with Gleason 7 in 2006. Had radiation in early 2007. PSA dropped to about 5 and rose to 15+ in 2010. My Oncologist was a research PC expert. He took an unusual approach to PC by immediately giving me a coctail of chemo after finding a met on my L3 spine. After the first cycle (8 weeks) of chemo, the met was gone. I continue having 4 more cycle, and PSA was undetectable for a while. He then switched me to Lupron and Casodex to keep PSA at undetectable. In 2018 PSA began to rise and doubled. He then prescribed Zytiga/Abiraterone and I was good for 4 years. In 2022 PSA begun to rise again but still no mets. During that period my Inc passed away due to brain cancer. I found a new research doctor at UTSW, he restarted Lupron +AA and up to know my PSA and testosterone is undetectable castrate level. Since your dad had no chemo, I would suggest find a doctor that will give him chemo to knock down the mets and AA + Lupron to stop the PC cells from growing. I am 77 and still play tennis and do volunteer work.
I saw your 'post' and decided to comment (it's been awhile since my last one).
When I got my Dx - it was worse than your fathers. That was nearly 8 years ago. I'm 72 years of age.
Initially my diagnosis was 'Advanced and Aggressive' prostate cancer / Gleason 9 / NODE positive (meaning it had spread - leading to metastatic status) and putting me at LATE Stage 3 and waiting for EARLY Stage 4.
I believed I was 'dead man walking' and thought I MIGHT have 3 years to live.
Of course my prediction was wrong and I needed to do a lot more research to come to some conclusions and help in my decision making.
My initial treatment was the 'max' amount of radiation to the prostate AND pelvic region, based on some hot-spots that were detected by scans.
Next, it was ADT (Lupron) shots every 3 months for 2 years THEN a 'vacation' after I had been in the 00.001 PSA range for about 1 year.
I was advised to NOT go on vacation, but I chose to do it anyways.
Within a little over 1 + years, I had a recurrence. My PSA had reached ~ 12.0 and there was signs of advancement - including some spinal hot-spots.
I was being scanned every 3 months (bone and CT) - so I was faced with a decision.
I chose to start another form of treatment (mono - using bicalutamide @ 150 mg. daily) and have remained on that protocol ever since. My mono therapy is not the Standard of treatment in North America, so I had to fight for it.
After about 3 years on this 'mono' my PSA went from undetectable (00.001) to 1.04 as of today. I continue the 'mono' due to very limited side effects - BUT it is not for everyone. Some do well and others need to get more aggressive in their 'battle'.
Today I feel GREAT - muscle mass has returned - virtually NO side effects - other than FATIGUE - which means I NAP when I need it.
The 'plumbing and bowels' are in good functional order and my medical team are very pleased with my current status and future prospects.
All the scans show 'no significant changes' noted.
I personally think I should be able to go for at least another 3 years without changing a thing - then I'll consider other forms of treatment IF the scans show evidence of significant spread in the organs and bones.
So my final comment for you is that 'longevity projections' are very hard to make, but generally speaking, todays' PCa patients are living longer / better quality of lives than in the past and that there is reason for some optimism.
Do some research - there are answers out there AND some 'Off Label' drugs and / or supplements MAY be beneficial in the battle against PCa.
No two cancers are identical - we all experience the disease in different ways. Although there are trends and patterns that many 'share', some predictions are not going to be reliable.
You are super lucky your mono treatment still working. My hubs was on that and it worked for a while but then PSA started rising again so now starting Erleada (along with Lupron shots). So far only side effects hot flashes and some fatigue.
I discovered a few years ago that SOME men can experience fairly HIGH PSA readings without having to continue treatment(s) with minimal side effects. I met with one of them personally and he survived for many years without treatment. He was a survivor of over 15 years.
My experience with Lupron was a nightmare. I will NEVER go there again. My medical team are aware of my decisions and OTHER options will be offered IF I feel very ill - otherwise, it's steady as she goes.
My mono-therapy is the best thing that has happened to me in years. I will decide when it's time to STOP - I am considering another vacation.
Quality of life means more to me than simple survival.
Agree! He had one Lupron shot several years ago after prostate cancer and radiation seeds. Was awful. Which is why this time tried the enzalutimide instead this last go round. But as it stopped working he’s on the new protocol. So far quality of life maintaining and as I’ve said here earlier if you didn’t know he had this you wouldn’t know he had this. (Well except for the little jelly roll that he never had before.) More to love! So keep on keepin on. It’s the best we can do!
IMHO, stop thinking about things you cannot control. Life expectancy is generally 3 to 5 years. I'm 4 years in and doing very well. Some men make it a lot longer and some men die sooner. What's important is making the correct decisions that give your dad the best chance for a long life with the best quality of life.
He's responded very well to treatment and has only one detectable met. What type of scan did he have? You don't mention if he's on ADT meds. MO will set a new direction for treatment, but you could be looking at years.
My husband was diagnosed with mets to lymphs and one bone met two years ago. He hasn't responded well and bone mets are progressing but I wouldn't be rushing the end for your dad. Lots of options out there for him yet.
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