Hey all. Hope everyone is staying safe and as healthy as we get these days. Had some good news at my 3 month medonc appt this week. My PSA has been around 10 while on Lupron and Zytiga. Latest check puts me at 0.2. That’s zero point freakin’ two! Wooot?, eh?!
Obviously this is great news in this moment. And I know it won’t stay low forever.
But I also asked the big question about expected longevity. Doc says probably 6 years, give or take. I know, this is an informed guess and treatments can change. But.....
My question: Assuming this estimate is correct, how long before I’ll start to feel pain or discomfort? I have mets on my right hip and sacrum, plus some lymph nodes.
I’m trying to get a grip on how I want my life to go. I know it’s going to eventually affect my mobility.
Just wondering what a reasonable estimate for pain/serious symptom onset. I was diagnosed with Gleason 7 (4+3) in Oct 2018. Beyond minor peeing issues, all my discomfort these days results from med side effects, not the actual disease. Manopause. You know the drill.
Any thots? Thanx!
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LessPaul
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Less is more, now. Congratulations .Welcome to club zero . If the doc says six years it could decades of life for you if all goes well from here . Enjoy the status and appreciate everyday not in pain . Working out to avoid osteo and cardio should be a goal if you’re able? Good luck moving forward. 🌵🥳🏋🏽♂️
Less Paul....Time to remove the word "less" from your name and become Full Paul now that Your PSA is 0.2 which is considered undetectable in people with intact prostate. I am just like you ...with 0.2 PSA at present....So we are low PSA friends now.
Coming to the fears about future. I never had any pain and its about 1 1/2 yrs. Some people never have bone pain...Yes..Its true.
Your MO is kinda right .about approximate survival . 78 months is MEDIAN survival in men with 0.2 PSA Nadir ...which means 50% men can go more than 78 months. It depends on their general health, dietary habits, physical activity, control of blood sugar and blood pressure etc. With new and better treatments coming fast, men can go for 10 or even 15 years. You are saying you have bone mets...Do you still have them ? ..because with 0.2 PSA, they may have disappeared by now. I suggest yo check Serum bone specific alkaline phosphatase level and if the result is in normal or low normal...median survival of 78 months gets even more likely. Start thinking and reading about what else you can do to consolidate great achievement you have accomplished with Nadir PSA of 0.2. Best Wishes.
Yes there is a study done by Maha Hussain et al over a decade ago which classified men into 3 groups ,those who reached 0.2 PSA Nadir, Those between 0.3 and 1.0 and those who had PSA Nadir above 1.0 to 4.0 . The median survival was given 78 months, 44 months and 22 months . Note that this study was done on men who were Only on Lupron.
Since Hussain's study, numerous studies have been done in US, Korea, China and Japan with more refined criteria. Too many studies for me to quote here.
Besides Nadir PSA ,they also checked Time to Nadir, Nadir T , and many other variables.
To sum it up, I will say that if PSA Nadir reached 0.2 and time it took to reach Nadir is above 9 months and Nadir T achieved was below 10. Then, the median survival of 78 months is much more likely.
If you want to add other factors such as CRP, Bone ALP. NLR, PLR, Hb%, LDH ,bone pain , performance level....you will be able to fine tune the survival estimate even more accurately.
2 years in and dropping PSA--way to go. Bone pain---well today was x-rays and cortisone shot in center carpal left hand--no cancer there, just worn out hand with bone on bone joint..2 years ago it was thumb rebuild on ten year plan and last month little finger surgical repair on eight year plan. Still counting down on my planned 10 years after Drs told me 12 months. With Gleason 9/10 wide spread with lymph nodes and bone mets like yours + two more on public bone. You should be on a ten year plan ++ with your status.
Hi LessPaul, regarding pain, I’m not sure if everyone will have the same experience as me, but my pain comes when a therapy stops working for me. For example, I had a lot of pain before I started on ADT and an AR inhibitor and was on it for about 14 months with no pain and at that point became CR. The pain increased and then I began Provenge which gave me some relief for about 4 months and then the pain increased again. This time the pain increase was faster and I just started XOFIGO and the pain went down again. The pain for me can be quite intense but fortunately we have some options to help.
Yup. Two major camps, strat and Les Paul. Strats are really clean (and light!). Les Pauls have a warmer native tone (and HEAVY!). I'm a 99% acoustic player and use the Les P{aul when I want to make some noise. I'm not very good on the electric and only a little better on the acoustic. Hence, LESS Paul.
I like the name. I chose mine very randomly because a very large tree had fallen in the neighborhood. I was an acoustic guy for the last 30 years and when I got dx I said screw it and bought a Ultra Strat and love it. I play it clean and I hardly even look at my acoustic anymore.
The only honest answer is, no one knows. BTW I still play my vintage Mosrite.
I had excruciating pain in my spine when diagnosed in 2015. PSA 227, Gleason 8. I pressed the doctor for how long I’d live. He said everyone is different, but if he had to guess, he thought I’d live 10-years.
After a long journey - surgery, radiation, chemo, ADT, Zytiga, pacemaker - My PSA is undetectable and I’m in remission. That ‘a 5 1/2 years since I asked him that question. And I’m going to live a lot longer that he guessed. I’m only 59 and have too much to live for.
My point is no ones knows because everyone really is different. What I have learned is to focus on living ... every day. Whatever will happen will happen. Worrying helps absolutely nothing. Living your life to the fullest is the way to go!
Best wishes on your journey - you are doing great!
Thanx to everyone who replied to my query. It's all great info. As an FYI, my last remaininmg uncle died this past spring at about 80 years old due to PC. He was not diagnosed until quite metastatic...about a year and a half prior to his death. He was golfing and experiecing joint pain, thought it was arthritis and saw a doctor. He was terminal at diagnosis. His last year and a half was very, very hard on him and his family. And I watched the whole process. In a word, it was nothing short of terrible. He suffered greatly. Of course, I can't help but equate my situation with his. That's what scares me so much...that my path will approximate his.
So.....I'm just trying to figure out how long I'm likely to have until the real chit kicks in. Kinda sounds like that question is unanswerable. Guess I'll know when I get there.
Based on my experience, trying to plan your cancer is futile. I had debilitating pain at diagnosis, mostly in my sacro-illiac (SI) joint. It was so bad I was laying on the floor of my oncologist's office because sitting in a chair hurt too much. It started improving with treatment, and at my first year cancer-versary I ran a half marathon to celebrate.
Then my cancer morphed into neuroendocrine and I had severe pain from a blocked kidney. More chemo and radiation to the bladder, and I was finally able to get my urinary stent removed. But the cancer came back again, so I'm now on my third flavor of chemo, and every chemo has caused treatment related pain for which I take Tylenol, Celebrex, and a bit of Oxycodone to manage.
Now here's the funny thing: that SI pain that was so debilitating at diagnosis isn't an issue any more. To the extent my devastated aerobic capacity allows, I can be very active, and just yesterday was marveling at my ability to do squat-thrusts. My SI wouldn't allow this two years ago, and now even though I'm in a more dire position in terms of cancer prognosis, I move better than I have in years. My current pain is more about ribs and a spine that hurt when I lie on them in bed, and I suspect is related to neulasta.
If I can just get the cancer out of my liver (which I've done once) and keep it out (which has been the tricky part), and manage to go a year or more without chemo, I'm hoping to run a full marathon, although due to anemia and impaired lung function it might be more of a walk.
That's a long-winded way of saying that cancer isn't a straight line from your current condition to the grave. Treatments can produce remissions with great quality of life, and then the cancer recurs and the issues that will bring are unpredictable. It can be a roller coaster of great responses to treatment alternating with devastating setbacks. Strap in, hold tight, and take it one day at a time.
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