Hello, new member here. Was recently diagnosed with prostate cancer with hip bone met. in one spot. Have had no symptoms besides difficulty urinating and occasional pain during urination. The above symptoms were the reason why I saw urologist who ran the tests. All my blood and urine tests came back excellent, everything is where they should be. The only thing that was elevated was my PSA at 21. I’m 70 years old, I’m not taking any medication, never have. Don’t smoke and drink in moderation only on special occasions (birthdays, holidays etc.) Don’t have any other health conditions, at least not aware of any, and consider myself otherwise healthy. I’m in relatively good shape for my age and my diet is rich in fruits/vegetables and low in animal protein. As you can all imagine I’m little overwhelmed with this diagnosis and want to know if this is a death sentence? My biopsy showed Gleason score of 4+4 which I understand is really bad. Dr. Wants me to do hormonal therapy- 1 injection every 3 month, plus some pills. Don’t know the names of the drugs as I haven’t started treatment yet. What can I expect? Should I be getting my affairs in order? Would like to hear what others have experienced if anyone in here has been through the similar case.
Thank you
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LuisJ
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The good news is that newly diagnosed metastatic prostate cancer is often a disease that can be managed and lived with for a very long time. Here are your current treatment options (there are many):
Thank you for replying. This is encouraging, when you say long time, what are we talking about here? Can someone in my stage live another 5 years with hormonal therapy?
Welcome to the club that nobody wants to join. First of all, ignore everything you see on the Internet about life expectancy, because those numbers are typically obsolete as treatments develop and, more importantly, you are a sample size of one. Secondly, educate yourself on this disease and all the treatment options, because you need to be the captain of your treatment team. This site is a wonderful information resource to start the education process. Thirdly, find a good medical oncologist who specializes in prostate cancer at a center of excellence, typically a teaching hospital affiliated with the University.
With those preliminaries out of the way, let me just say that most of us here are Gleason 8 or worse, meaning we have an aggressive cancer. Once it has metastasized out of the capsule in the form of bone or lymph node Mets, it has traditionally been considered incurable. However, the disease can be managed for a long time with modern medication‘s, and there are plenty of members here who have survived for 10 or even 20 years with Stage 4 disease.
Now for the good news. It sounds like you have low volume disease, meaning very few Mets. That is now referred to as oligometastatic disease. That’s important, because a growing number of doctors are becoming convinced that oligometastatic disease can be cured, at least in some people, with a combination of systemic therapy and aggressive local treatment, typically Radiation. I was diagnosed at age 67, in worse shape than you, and after aggressive treatment, I have had no detectable cancer for three years. I don’t know if I’m cured, but it’s been a nice long remission.
I’m not saying this is a picnic, and the treatments have significant negative side effects, but the bottom line is that you very likely have lots of productive living years ahead of you.
"What can I expect? Should I be getting my affairs in order?" No need to get your affairs in order any faster than you were prior to diagnosis. On the other hand, you should probably learn about and prepare for the side effects of hormonal therapy AKA androgen depravation therapy, which is basically chemical castration. There are lots of side effects, and they aren't much fun. You can read about them in various books on advanced prostate cancer and from resources available on this site, e.g., messages and replies, links to references (especially those from Tall_Allen IMO), and MaleCare seminar video recordings. In all cases apply critical thinking skills to segregate facts from anecdotes and opinions.
One bit of advice on dealing with ADT side effects: This is the new you. Don't keep comparing the new you to the old you.
What is this RSO I’ve been reading about? I mean.. I know what it is, but does it help with either cancer or therapy side effects? Is it something that people take together with therapy to alleviate the side effects?
One thing you must now be determined to do. Exercise , exercise exercise. Especially weight training. You will be given drugs that will reduce your testosterone to close to zero. If you don’t lift weights, you’ll turn to mush. If you do at least an hour three times a week, you can actually maintain and even increase muscle mass. And you’ll feel much better and increase your survival odds. If you can’t afford a regular trainer then hire one to show you what to do. I can tell you from personal experience this will make a huge difference.
This is a horrible disease. My husband was 58 at diagnosis. PSA was 29 at the start and it's been way over that but rarely under. He has not responded to anything. Every man is different. Take this very seriously and find a really good oncologist/teaching hospital - review clinical trials. Hubs was in really good shape - rarely drank, never smoked. We found out that his father had PC and hubs also has a rare gene mutation that we had to share with our children. This is an excellent site and there are a couple more with really good info. Keep researching and don't be afraid to ask any question!
When you say hip bone what do you mean? If you mean pelvis that's one part of the hip but if you mean femur that's another. If you have a metastasis in the femur you may need radiation otherwise you might get a pathologic fracture. Your urologist or GP may not be tuned in to this possibility. You should consult an MO or RO.
Hi Luis. My dad was diagnosed at 70 as well with a Gleason score of 9. He had no symptoms for almost 4 years apart from some side effects of treatment. He continued to work (until the pandemic hit), travelled lots, spent time at the cottage and celebrated many events. While his situation has changed now, he really did enjoy life. Get the treatment you need, but don’t dwell on the years. My dad did get his affairs in order early just to have peace of mind. Live life to the fullest!
4+4 isn't great, but try 5+4 & 5+5! That's my world and in the lymph nodes outside the pelvic area! A lot of the 5 and 10 year survival % are low, but my goal is to be in those low percentages!! Believe attitude is a big part of your treatment. Also, in my case, made major diet changes. I thought I eat a healthy diet before, but switched to what I refer to as scorched earth approach. May or may not help that much physically, but mentally, I thinking I'm doing something positive. And then there is the proven benefit of excerise.
Luis, I was diagnosed 4+4 in March, 2014. I have been in durable remission for 7.5 years starting out with casodex; then Lupron; then 5+ years on Xtandi and Lupron/Elegard.
It’s always good to have your affairs in order including a will and living trust.
I’m 81 years old and enjoy 2 fingers of scotch and a good cigar every other day.
Enjoy your family and live for today. Be proactive in managing your own care, get a good oncologist. I have a good one in the Kaiser system.
Join a local support group. Keep the faith. There’s some amazing treatments out there and we’ll funded research and clinical trials. Most books are usually out of date by the time they’re written.
Welcome to our group! Lots of helpful information and advice here. We have all been where you are … absorbing the shock of a PCa diagnosis.
My advice is to make sure you educate yourself. This will make the journey much easier to manage.
As for what will your outcome be, as others have said, every patient is different. But there are many more treatment options available now than even just a few years ago. And there are many warriors in our forum that have lived with prostate cancer 10, 15 and even 20 + years.
Best wishes on your journey! We are all here to help. Don’t hesitate to ask questions and for advice. Someone here will know the answers to your questions or can recommend where to look.
Okay Luis.j this is the story,,,,, You will be around to drive your partner (if you have one) crazy for 20 more years (at least). Get a GOOD medical oncologist to lead you through the minefield... If you don't know one then post your location here and ask for any references to a GOOD MO. We all went through what you're going through. Post here and try to LAUGH. One day at a time...........
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