Hello everyone. You can probably remember your first time discovering this website and your very first post. Perhaps a lot like mine.
I'm 52 and recently diagnosed with metastatic prostate cancer. I had no symptoms. My doctor was tracking my PSA (3.58 in 2022 rising to 5.46 in 2024). Here's the problem. I was also on finasteride so those numbers could have been as much as double this whole time. So frustrating because I take care of myself, have an annual exam, and my doctor said all we had to do was keep an eye on it.
Per my request, he referred me to a urologist who did a DRE and felt a mass. Uh-oh. He then sent me for an MRI which revealed:
1. Lesion 1; peripheral zone centered around the base with extension into the right seminal vesicle (calculated volume 6.2 mL); PI-RADS 5: Clinically significant cancer is highly likely.
2. Diffusion restricting lesion within the left aspect of the pubic bone. Recommend correlation with bone scan or PSMA PET/CT
3. Bladder wall thickening which is accentuated by underdistention. No suspicious urothelial or renal lesions identified.
- PI-RADS v2.1 score 5: clinically significant cancer is highly likely to be present.
- Lesion is associated with macroscopic extracapsular extension.
- Right seminal vesicle invasion seen.
- No enlarged pelvic lymph nodes. 5 mm indeterminate right internal iliac lymph node
- Left pubic bone lesion
Then they ordered a PSMA-PET scan. Here are the results:
- High PSMA expression right posterior prostate base to apex with right seminal vesicle extension (SUV max 15.7; 5-437).
- Right pelvic sidewall lymph node with low PSMA uptake measuring 6 x 7 mm with SUV max 2.9 (5-45) and right internal iliac node with intermediate PSMA uptake measuring 9 x 11 mm with SUV max 6.3 (5-396).
- Intense PSMA avid osseous focus with faint associated sclerosis left superior pubic ramus (5-440) and left inferior pubic ramus (5-462).
Luckily, I managed to get these scans done very quickly. I called every day for cancellations and, if you can believe it, there has only been three weeks since the doctor felt a lump to getting my PSMA results. It's been a whirlwind filled with agony
I've been referred to a surgeon who is going to rush a biopsy, hopefully in the next week, so we will have even more information. In the meantime, he has referred me to both a medical oncologist and a radiology oncologist. No decisions have been made yet.
This next month is going to be a firehose of information, which is all so overwhelming and exhausting and, of course terrifying. I have a wonderful wife and two amazing teenage kids. I can't even go down that rabbit hole yet of how long I've got. Or at least, I'm trying so hard to avoid that rabbit hole (aka Google).
I am completely resigned to the idea of a prostatectomy ("Just get it out!") but now that it has metastasized to a few lymph nodes and two spots on my bones, I'm devestated. The doctor says surgery MIGHT still be possible, but since it's metastasized the cancer is here to stay.
I know many of you might be worse off, and probably thinking, "This guy's a cry baby." Or some of you might be much, much better off, and thinking "This poor guy."
On the one hand, I have 100 questions. On the other hand, I really just want to hear some words of encouragement, clarification, as well as your own experiences so I don't feel so damn scared and alone.
I have no idea what the typical next steps are. I have no idea what questions I should ask which doctors. I have no idea what treatments I should be considering. I have no idea how to cope with all this without the compassion of strangers ... so I'm thanking each one of you in advance.
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KMY28
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PS I am lucky to be in Los Angeles with doctors at Cedars-Sinai. I have also been advised to check out Dr. Mark Scholz. Lots of options, which is good, but also overwhelming, so if you have any local experience, that would also be appreciated.
I was also in your situation: diagnosed 3 years ago Stage 4 metastatic. Lots of great advice here from lots of people who are much smarter than me. All I want to say is that, with triplet therapy, you are going to get the disease under control, life will be good again, and you will live a long time.
I certainly remember how I felt after learning I had prostate cancer. Doom and gloom. First, you have metastatic cancer so remove the thought of a prostatectomy as a viable option.
Second, certainly get the biopsy. MOs are finding it useful to know up front what treatments are possible after the initial treatment protocol begins to fail.
Third, triplet therapy might be what you are advised to begin with. Docetaxel, ADT and (abiraterone acetate (zytiga) or darolutimide (Nubeqa)).
Maybe discus spot radiation to bone mets with your RO. Dr. Scholz is definitely a fine MO.
Words of encouragement here. Diagnosed at 54 and still going strong at 61. Cancer woke me up and I started being "healthy" Diet, gym and good living. This is not a death sentence
"I've been referred to a surgeon who is going to rush a biopsy, hopefully in the next week, so we will have even more information. " That is completely unnecessary. You already know you have a bone met, so a biopsy couldn't possibly make a difference in the therapy you get.
There is an excellent treatment available now called triplet therapy. You can read about it here:
The reason that radiation may provide better results than surgery is that radiation treats an area outside of the prostate that surgery can't reach. There is an ongoing clinical trial to see if a prostatectomy is as effective as radiation.
None of this is curative, but hopefully, you'll be able to live with it for a very long time until you die of something else. I think of it like living with HIV or diabetes.
Here is a good explanation of your kind of prostate cancer:
I was also 52 when diagnosed. I remember how shocking it was and the despair which inhabited me thinking about my 17 years old daughter.
I am now 59, still here. With a bit of luck and triplet therapy you can add many more years to your life.
Try to meditate to get rid of this bunch of anxiety and find good doctors, with whom you feel comfortable to ask silly questions and help you understand the option and the best treatments.
hi KMY28, I am in the UK but was diagnosed with Gleason 5+4 stage 4 PCa three years ago at the age of 49. I had no symptoms and it was only picked up through an annual PSA test. Difficult to come to terms with but there are lots of treatments as Tall Allen has outlined. I had Docetaxel chemo, radiotherapy to debulk the prostate, targeted RT to my 3 x bone mets and ADT. Currently, PSA undetectable (and has been for about 18 months). I know at first it can seem overwhelming. I spent time researching the treatments and outcomes which helped me understand why the oncologist was proposing treatments and timing. Good luck.
I’m 51 and was diagnosed 2 months ago, PSA 530, metastatic spread to lymphs. A huge, huge shock as I was and still am asymptomatic. It came out of nowhere and tipped life upside down.
I decided from day one I’m fighting this and beating it… and trying to keep as positive mindset as possible. When thoughts turn dark I say no, I’m fighting this. It does help me. I’m on ADT and Enzalutamide, and though there are side affects, I feel fine… better than I expected to. I changed my diet to vegan (though that’s not vital, but read up on diet… largely plant based is beneficial… processed food is not good). I’m exercising a lot… losing any excess weight is important… as is strengthening your muscles… which will help with reactions to medications further down the line, and general well-being.
We’re living in a time of astonishing medical advances… ai, quantum computing, nano-tech can all help speed medical innovation. I’m convinced that will help us.
There a great small essay by Stephen Jay Gould called ‘the median is not the message’ which helped me a lot. Inevitably we do see what possible life expectancies are (and they’re now better than ever)… which can be difficult… these are given as median life expectancy… it’s important to remember that there is a looong tail out to the right of where the median curve tops out. There’s no reason why you can’t be a long way along that long tail. journalofethics.ama-assn.or...
Thanks for the site for Dr. Gould's article. It is helpful for not only dealing with cancer, but facing all of the difficulties we may face. I plan to share it with my MO. Wishing you success with your journey.
Similar to my husband, 2022 has frequent urination, urologist said mothing serious put him on fowmax, psa was hovering around 3 . Around September 2022 psa rise to 5, dre conducted, urologist said its clear, continued with flowmax, October 2022 blood in semen, put in antibiotics, urologist still insists not cancer, dec 2022 psa rise to 7, finally urologist requested mri, Jan 2023 pirad 5, feb 2023 biopsy, gl 9 aggressive, psma scan found spread to left pubic ramus.Treatment started with zoladex and erleada, radiation to prostate and pubic bone started May 2023, 20 sessions ebrt. After completing in radiation, in October started 6 cycles chemo docetaxel, ended January 2024. Somatic testing of prostate sample from biopsy found mutation in pten. So aggressive treatment was necessary.
Post treatment PSMAscans in March 2024, prostate almost clear, pubic bone still lighting up but suvmax reduced from suv13 to suv8.
Did you get somatic testing on your tumor? This will determine treatment choices.
I was 50 when I had the diagnosis, metastatic to lymph nodes and bones (high volume). I am 51 now and it seems like a century ago
The only reason I can think about to justify a biopsy at this stage is to try to find some somatic genetic mutation. But anyway I think they should first look for a germline mutation (which is a blood test). If you have a germline mutation then somatic is almost useless because germline means it's in "every cell". Unless they suspect you might have different mutations at different levels, then yes.
But otherwise I would not see any reason for a biopsy, of course since the tumor escaped prostate in every direction, gleason score makes no difference anymore.
Consider triplet therapy (numbers look really good), exercise as much as you can, try to eliminate sugar and reduce carbs and alcohol...and of course read my posts 😀😀😀
Listen to the interview with Dr Smith on research to practice. About the 30 minute mark. He discusses why he does biopsies on his patients at diagnosis, especially the more advanced patients at diagnosis. I think Somatic is more useful. If you have mutations in the tumor, you can confirm if hereditary via germline testing. If you only get germline, you could still have Somatic mutations.
Yes but since germline is less invasive I would do that first. If it comes out positive no need of somatic, if it is negative then test somatic. That’s how I would think at least 😃
Hang in there. At first a dark place but you learn to take it one day at a time and be thankful for every moment with your beautiful family..I often list to Eckart Tolle the power of now and he is into awareness...dont waste your time about the unknown...none of us no how much time we have left and we live with this. you see that in all of the comments..so keep active, excercise and dont let the dark beat you..its a waste of time and cancer loves that..of course you have to plan and this wonderful site will help you navigate..
About 2.5 years ago, I was in a similar situation to you. I had just turned 52 and had the bomb dropped that I had lymph node mets and a met on my right hip. I had a high volume Gleason 9 when I had the biopsy.
It’s great you found this group and are in LA with lots of great resources.
I was in great health otherwise at diagnosis and it was difficult to hear “no surgery for you” with basically no explanation. However, now I’m very glad I didn’t have surgery.
I ended up having triplet therapy with ADT, darolutamide and 6 cycles of chemotherapy with docetaxel. After that, I had radiation to my prostate, pelvic lymph nodes and my bone met. My latest PSA (2 weeks ago) was still undetectable (been that way since finishing radiation in January 2023). Aside from the side effects of the ADT, I feel great with zero incontinence and no erection issues.
I’m happy to answer questions about my journey, just send me a message.
Hang in there. It’s a huge amount of stuff to process.
Regarding "no erection issues" I hope I'm not telling you something you don't already know, but the negative effects of RT for erectile performance usually show up after 18 months or more and can last up to 5 years post RT.
To help protect erectile function you can ask your GP to start Tadalafil 5mg daily for erectile dysfunction. This is protective of the endothelium (lining) of the blood vessels (which is what is damaged by RT) throughout the body, so has cardiovascular benefits in addition to erectile health.
If you have a good relation with your medics you could just explain your reasoning, but if not just say you are having problems and it's causing stress.
Remember, these erectile drugs were 'discovered' during cardiovascular clinical trials when men started reporting 'pleasing side effects'.
Dear KMY28 - i don’t have the skills, knowledge or experience to answer your treatment questions. However, I was diagnosed 4.5years ago with hi volume bone mets de novo A PCa Gleason 4+4 & psa 680 and I’m still here & living a happy life. Devastating news & it takes time to take it all in. Give yourself time but getting the right treatment & trusting it, exercise, diet, sleep, hydration and family & friends are the key. In addition finding this forum was one of my luckiest breaks. Also I found it beneficial to read as much as you can about your disease and available treatments. Good luck my friend 🙏
Diagnosed late 2021 at 50. Married, father of 2 teens. Treatment started in January 2022. 30 days of Casodex, daily zytiga +prednisone along with Lupron and xgeva shots.. Changed from Lupron to Orgovyx and added metformin after about 5 months. Had SBRT to prostate, surrounding areas, and bone mets in 2023. Just started vacation from all meds a few weeks ago. One of my docs also said "exercise, exercise, and then exercise!" All things considered, I'm feeling pretty good these days, and others on this site are doing better than me!
Most all of us on this forum have gone through a similar reaction of shock when we first learned of the diagnosis of metastatic prostate cancer. You will go through various stages, similar to the stages of grief;
denial, anger, bargaining, depression, and acceptance
Like many have stated here, there are numerous treatment options available to you. Dr Scholz is one of the gurus of prostate cancer treatments. Everyone can learn a great deal from his videos.
There is no fast track to the acceptance phase. You just need to take time to learn all you can about this disease. Only then can you understand what is taking place and be able to help your family understand also.
So sorry to hear of your diagnosis and the anxiety it is causing. It sucks, but welcome to "The Club".
I had a similiar diagnosis and was confirmed metastatic stage 4, PSA 466 this past February. Getting things done quickly is essential and you've done a great job. This diagnosis saps your strength, your emotions and your spirit. You will get all of these back.
The group here is great and will answer questions and support you. It sounds like you have a great family and support. Fortunately (or not:-)) for me, my wife is Type A. She learned more and faster than I did. She takes notes at the doctor so I am just free to think and listen. We discuss my disease often and are in total communication.
We are fortunate to have this disease at this time. Medical advances are huge and there is a lot of research and therapy options in place and in the pipeline. No one tells you you're not going to die in 3 months and they leave your emotions to run wild. Totally natural so go through it.
You will come out one day with a new attitude and ready to fight. When I got to that point I truly told the disease to F** Off and my whole approach changed. You'll get there and it'll feel GREAT! Then you move on, live, learn and lean on your loved ones which some of us men are new to.
I got my new PSA test results just this morning. Still undetectable. Meds are working and I'm attending my son's white coat ceremony today for his doctorate in PT school.
You're gonna be here a while and you're going to learn to manage this and live your life exceptionally!
You’ve gotten some good advice and, I hope, some encouragement from other members here. Everyone can relate to the gut punch diagnosis. We’ve felt the anxiety you describe. We’ve got experts here and lots of compassion and empathy. My DH is 11years into this journey. (Hope that’s encouraging in itself.) We’ve learned to change our thinking from dying from cancer to living with it. That mind shift takes a while. Wishing you all the best,
I was diagnosed in 2013 with similar situation. At that time, RP was the norm. (Now, as TA and others suggest, triplet therapy is probably a preferred option). Twelve years later in 61 and doing fine . I suspect you’ll do the same.
Two recommendations: read Walsh book on PC to give yourself a background; and try to get in good shape if you are not already. It will make everything easier.
Good luck! With the support of your family and good team you’ll do great!
8 years ago I got my DX and was thinking to myself that it was all over for me.
I was T3b and NODE positive. Advanced and Aggressive PCa they told me.
I believed it was a death sentence. My Gleason score was a 9 - not much room to peak out at 10.
I was passed the point of surgery, so I went the radiation route to the pelvic area and prostate.
I got the max amount possible - so further radiation treatment is basically off the table for me.
I was put on the 'hormonal protocol' - casodex, then Eligard for about 2 years.
I quit all treatment (I went to undetectible for at least 18 months) to see IF I still had PCa (recurrence which happens around 50%).
My PSA slowly started to rise and once it reached '12+', I decided to go another route - mono-therapy of bicalutamide daily (150 mg). Note that this is not the SOC, but we tried it anyways at MY insistence..
I was on the mono for roughly 2.5 years - I had returned to undetectable.
In the last 9 months my PSA started to climb again, so about 6 weeks ago, I stopped ALL treatment again.
For me it's a wait and see thing, but I feel fine and know that I should still be around for awhile yet.
Perhaps there might be further options for me down the road.
I had ALL the scans you mentioned and as part of a clinical trial, was tested every 3 months for signs of progression.
I remain stable - no further signs of advancing PCa - but I still have PCa, so I am aware of it.
My message to you is this -> you can speculate all you want, but the reality is that MOST men survive PCa with various forms of treatment. Even many of the 'advanced' cases. There's also future hope in new treatment options. No one lives forever. EVERY case of cancer is unique to the individual, although there will be some stages that will repeat in specific groups.
My advice is to do as much research as possible (this forum is a good resource). There MAY be some off label drugs or supplements that WILL help.
Get connected to qualified professionals, get an initial treatment plan and go with it. There MAY be some clinical trials that you could qualify for - there would be pros and cons to consider.
Don't give up and don't stop living. You have a family to consider. You will have some side effects from treatment(s). You won't know until you 'participate'.
My age - I was in my early 60s when it all started to happen to me.
Let me rephrase...based on my own experience: it will get better, but your life will kind of become like "concentrated", you will have to digest more emotions than an average man digests in 30 years in a relatively short period, but you will feel way better and appreciate every moment much more than usual....so I can summarize it as this "I was 50 when I was diagnose, now, 5 years after my diagnosis, I am 51" 😀😀
As you can see from the comments above you are walking the path of many of those guys. We all totally understand the mental anguish of your diagnosis but rest assured that you can plan on a long life remaining with modern medicine.
After the shock you will enter the next phase of information gathering. This site and the guys and gals here are amazing in this arena.
At this stage I suggest you start now to increase your resistance and aerobic level. As mentioned above diet change will help with weight also and can even have a positive effect.
Last but not least keep the lines of communication open with you wife and family. As of today you are not the only one affected by this prognosis.
Do not be afraid to ask questions before and after doctor visits.
THANK YOU. I'm sure there's a lot of info here about diet and exercise, but if you (or anyone) could point me in those directions that would be appreciated. Decision and information fatigue really setting in so I'll gladly accept any links and shortcuts to resources you've all found helpful.
What you are experiencing is normal and you are asking the right questions.
Every case is different, but I had triplet therapy. Many feel that there is no point in getting a prostatectomy once the cancer cells have escaped the prostate. Radiation to the prostate might have fewer risks.
We have all gone through some version of what you are going through and understand the overwhelming feeling of dread and disbelief. We do not consider you a "cry baby"!
It is all about educating yourself so that you can have good questions for your MO and RO based on a solid knowledge of your disease and treatments. I often recommend "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer", a paperback book available on Amazon and other major book sellers. It's a primer on the disease that provides details on grading it, types, treatments , stages, etc.
That along with answers you may find one university hospital website that specialize in PCa, the Prostate Cancer Foundation, MaleCare, NIH studies and here, among many resources. As you gain more knowledge, it will help you understand that there are many good treatments that can be effective for years and new ones being approved regularly.
As questions here related to your current situation, not future treatments. If you take it one step at a time, I find it helps reduce my anxiety.
Do soem homework and come backw ith your questions....Good luck!
Your story is similar to mine, except it was my urologist who had me on dutasteride and said not to worry as my PSA increased while on the drug. But that was 9.5 years ago, and although managing the disease is a full-time job at times, there are many other chances to enjoy a rich life!
Will tell you how I planned on my own case. After 3 months of 10+ hours per day research (was retired then and could had afforded the time and effort) I came to the conclusion that there is no "cure". Treatments are trades of time-outs against SEs. I decided on prostatectomy and would be happy if it would return to me 3 years of no treatment. I came short to 2.5 years when started Bicalutamide expecting 1 year of stable state before sRT (COVID time). This time luck was on my side. Almost 3 years and counting. Bottom line: You are sitting on the roulette table with a number of chips in front of you. What sort of betting would you devise so as to stay sitted as long as possible?
I hope what I say provides you some hope and comfort. I was diagnosed more than 12 years ago at age 54 with 4 bone Mets, an PSA in the mid 30s that rose to the mid 40s before my ADT treatment began. (I also had a dirty lymph node that was removed along with my prostate.). I have been on ADT the entire time (except for 3 “vacations during the first 5 years) and had my largest tumor (in my left acetabulum/hip) radiated 2 yrs after dx and again 10 yrs after dx. Triplet therapy was not the standard of care at the time. Hopefully, you will respond well to treatment and be able to enjoy life for longer than I have already done.
I was diagnosed a little over 24 years ago. The treatments then were very limited and did not appeal to me at all. I am a quality of life type of guy. Finally when I was on crutches and mri showed 2 new compression fractures I figured I better do something about it. Started adt and responded well. Minimal side effects. Yesterday I took my canoe over to the lake by myself and loaded my elec motor and 52# lead acid battery and did some fishing. I eat what I want within reason and enjoy life. Honestly I think I’m in better shape than most other 74 year old guys I know. Stay away from deciding how long you have by reading the internet. The only one who knows tha can walk on water so that eliminates the doctor too. I pray quite a bit and know the credit for me still being here is because for some reason God thinks I have more to do here before He calls me home. God bless you and as they say a picture is worth a thousand words may this picture give you some encouragement.
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