My father (63M) was just diagnosed with high-volume metastatic prostate cancer

[Sadsprout]

Hi everyone,

I’m here with a heavy heart and an open mind. My father (63M) was just diagnosed with stage 4 (M1b) high-volume metastatic prostate cancer, and I’m looking for support, advice, and any success stories you might be willing to share. I want to tell you everything we know so far in detail.

Here’s his current medical status:

• Age: 63

• No pain currently, feels healthy, no weight loss. Urologist explicitly stated my dad is young, healthy, his kidneys work very well, etc.

• Diagnosis: Acinar adenocarcinoma of the prostate

• Gleason score: 4 + 4 = 8 (ISUP Grade Group 4) — on both sides of the prostate

• Right prostate: 3/3 positive biopsies, ~90% tumor volume

• Left prostate: 2/2 positive biopsies, ~40% tumor volume

• High-risk features:

• Invasive cribriform or intraductal carcinoma (IDC-P) seen in biopsies

• High tumor burden (total 5/5 positive cores)

• Imaging:

• PSMA PET: shows widespread bone metastases (M1b)

• CT Thorax: no clear signs of organ metastases or lymph node involvement

• Staging: cT3 N0 M1b

(Tumor has spread outside prostate but no lymph node involvement). PSA was around 70 a week ago.

⸻

Treatment Plan (Palliative Triple Therapy):

He has started androgen deprivation therapy (ADT):

1. Zoladex (Goserelin) injections every 3 months — lifelong

2. Abiraterone (1000mg daily) + Prednisolone (5mg daily)

3. Referral for Docetaxel chemotherapy — will likely begin soon

4. Support from oncology nursing team

5. Possibly palliative radiation in the future for urinary symptoms (TURP considered)

⸻

Other notes:

• He has no pain, walks and functions normally.

• No major side effects yet, treatment started recently.

• Emotionally, we’re devastated. He looks and feels so healthy. It’s hard to reconcile what we see with what’s on paper.

⸻

What I’m looking for:

• Has anyone had (or seen) success stories with this diagnosis?

• How long can we realistically expect him to live — 2 years? 5?

• Anyone respond really well to abiraterone + chemo?

• How quickly do symptoms typically show up after diagnosis?

• Any experimental treatments or clinical trials worth exploring (e.g. Lu-177 PSMA, PARP inhibitors)?

⸻

Why I’m here:

I’m 28, and I feel like I’m watching the strongest person I know slip away before anything has even happened. I just want to understand what might be ahead, how to prepare, and how to stay strong for him without falling apart myself.

Thank you for reading this far. Any insight — hopeful or realistic — would mean the world. I cried my eyes out for two days but I've been reading a lot of hopeful stories from others and I hope to gain some insight. We are located in the Netherlands. Wishing everyone lots of love and health. This forum gave me some hope tonight and I can't thank you enough.

[Pca2024]

I think you are on the best possible path given the diagnosis. You can find people on this forum known as super responders who have lived 20 + years on this diseases because of the fantastic response to harmony therapy. Symptoms can be kept at bay for a long time if he keeps following the advice of his medical team. All the best.

[Sadsprout in reply to Pca2024]

Thank you so much Pca2024 , I really appreciate it. I have been reading up a lot and this forum has been a sliver of hope in this dark time.

[Pca2024]

You may find Edbar's profile useful . healthunlocked.com/user/EdBar

[Sadsprout in reply to Pca2024]

Thank you so much, I will go through his profile this evening!

[GP24]

Your father is treated according to the PEACE-1 trial. This trial reported a median survival of 5.1 years for the high-volume group, which I think your father should be grouped in. New treatments became available after that result was published and I would expect that your father lives longer than that.

As an experimental therapy I would suggest Xofigo which radiates the bone mets. It is approved for castration-resistant patients but I see no reason why it should not work earlier.

[Sadsprout in reply to GP24]

Thank you so much for your reply GP24. Our urologist also mentioned that new treatments come out constantly. At the time I did not fully understand what this would mean for us, but reading all these comments has put a lot of things into good perspective. Will def ask about the Xofigo, it's a name I've seen around here a lot. Thank you so so much.

[3putt]

Pretty much matches my diagnosis almost 8 years ago. One thing I’ve learned from this experience is that everyone’s journey is different. My ride has been pain free with minimal side effects. Best advice is to stay as active physically and mentally as possible. Fighting through the fatigue is probably the most effective way to fight the beast. Best wishes on a successful journey!

[Sadsprout in reply to 3putt]

Hi 3putt, so sorry to hear about your diagnosis but what a great blessing to read that you've been kicking it for 8 years and going! I will hope and cross my fingers that my dad will not be in discomfort. We are all going to follow the Mediterranean diet and starting tomorrow my dad and I will try working out together. I'm a bit lazy (lol), but I really want to show my support and motivate him. Thank you for your kind wishes and advice! Lots of luck to you as well.

[3putt in reply to Sadsprout]

That’s awesome. My wife and I also utilize our e-bikes almost everyday. Makes us feel like teenagers. Attitude will control toil altitude!

[kiteND]

I realize it can be scary. For what it is worth, his diagnosis was very similar to mine about three years ago. I was 59 and had almost the exact same diagnosis. As others have said, the triple therapy started/recommended sounds like a good plan. There is a lot of information here and some on facebook.

[Sadsprout in reply to kiteND]

Hello kiteND, so sorry to hear about your diagnosis as well. I am happy to see that you are here, I might look around on your profile later if that's okay! It's good to see that the treatment plan we have going on is a solid choice. Thank you for sharing and best of luck to you as well.

[Tally111]

I agree with 3 putt. I have had an initial similar diagnosis as your dad with lymph node involvement instead of bone mets. Its been five years and am looking forward to another five. Every case is different.

[Sadsprout in reply to Tally111]

Hi Tally111, thank you for your reply and sorry to hear about your diagnosis. I wish you 5, 10, 15 years more! Even if it's just a number on a screen, those 5 years give us some solace while navigating through his diagnosis. Best of luck to you.

[HikerWife]

Hi - I know this dx is a big shock and hard to swallow! My husband had a VERY similar dx 2 1/2 years ago at age 68. Similar biopsy results, bone mets all over. I could hardly breathe for months after the dx. He opted for the triplet therapy (eligard, abiraterone, and docetaxel). He finished his docetaxel in June of 2024, and is still taking the eligard (3-month shots) and abiraterone/prednisone. His PSA, which started at 279, has been steadily ticking downward, is currently undetectable (<0.02). He exercises 5x week (recumbent bike and light weights), takes calcium and D3, and all his blood work is stable and looks good. He has no pain and is feeling generally good. Of course, we have no idea how long this run of luck will hold out - our oncology team has assured us there are more options when it does. There are a number of men here who have been "maintaining" for quite a few years, having started with the triplet therapy and continued with doublet. One thing I would definitely recommend - look into icing hand, feet, and mouth (suck ice chips) during chemo infusions, My husband had no problems with mouth sores, neuropathy, or nail bed issues. Lots of info online, as well as help here. Good luck - you will adjust to your 'new normal'. It's not easy, but there is great support here.

[Sadsprout in reply to HikerWife]

Hello HikerWife, thank you for your detailed reply. I really appreciate it, what a scary time it must be for you as well. I am so happy to read his PSA has dropped below 1, that's amazing! We are going to work out together starting tomorrow morning and I plan on consulting with our GP for extra supplements as well. I will read up on the icing, thank you for that tip! I hope my dad's journey will be relatively pain free as well. Best of luck to both of you and thank you again for sharing your story.

[ELOfan in reply to Sadsprout]

My Dx similar to Hiker Wife's husband and I went on triplet therapy September 2024 and have responded well to treatment. You could read my bio if you have time. I did not have as much trouble with chemo as some people and was very relieved that I could do it.

[Kaliber]

hi sadsprout ….

I too have high volume Mets, Mets in quite literally every bone in my body ( mainly on my joints ) ….even tiny ones on my mandible ( jaw bone ) , nasal passages…skull …everywhere. All my lymph nodes are thought to be involved as well.

I’ve been on lupron - xtandi for 6 and a quarter years now and still in there chugging along. I’m a super responder and have about every possible side effect from the drugs.

The combination of cancer damage and side effects have put me in a wheelchair for a couple of years now. All this and I still find ways to get on with my life and enjoy my best possible QOL opportunities.

Longevity wise, imho, no one can predict when we will pass. Not even a table full of specialist cancer doctors. When I was diagnosed my team of doctors were convinced I was finished and wanted me to enter inpatient hospice …. Yet here I am all these years later. I’m not going to say it’s been easy, is hasn’t. But no one , not even highly educated and experienced doctors can say , with certainty, when we will pass with this disease.

When first diagnosed, the average time doctors spouted was 18-24 months. Couple years later it went to 24-36 months and now it’s up to around six years , but there are many men on this group that have lived much longer.

Based upon what I see from the many men on this group, it’s possible ( perhaps likely ) that your father will live for a goodly chunk of time , longer than you might expect. better drugs and more advanced treatments come along all the time which stretch our length of survival as well.

I would say, tho, that “ now “ is the time to get out with your father and build those QOL memories that carry you and the family for your lifetimes. Your father is probably at his best physical condition now. The drugs and cancer will diminish him over time . I wish I had done more QOL things with my wife “ before “ my wheelchair days ….for example. Back when I felt much better than I do now , over six years later.

IMHO, you can perk up and put a little smile on your face. I suspect your father has more years to spend with you, possibly a lot more years even. Years to spend enjoying time together , time with your whole family. There are lots of new drugs in the pipeline , in a year or three, who knows what might come along to extend his life many more years.

My advice: go give your father a great big ole hug with that smile on your face….. take him out to lunch or dinner and have some quality time together. It’s good medicine for both of you.

❤️❤️❤️

[Sadsprout in reply to Kaliber]

Hi Kaliber, thank you so much for writing this detailed and thoughtful reply. So sorry to hear about your diagnosis. I can imagine that the result of your treatments, such as the wheelchair, might not be all rainbows and sunshine, but I really admire how positive you seem to be. I am planning on working less and spending lots of time with my folks. I want to travel around Europe with them and see all those places we always planned to go to. Next year we are going to buy a van and travel around Turkey as well. I am excited to make these new memories together. My life until now just seems so pointless after this diagnosis. I was so worried about empty, arbitrary things, spent my days painting my nails and watching TikToks or slaving away behind a desk 40-50 hours a week. I am looking forward to all the beautiful things we will get to do together. In a way I understand your regrets, but as a caregiver or bystander myself, I bet that your wife feels lucky and blessed to even be standing next to you after all this. I feel the same way about my dad, even if we just sit on the couch and listen to each other's breathing. As long as he's here, it's okay. I'm sure your wife feels the same way, so don't be too hard on yourself. Your comment really, really touched me and I feel like I can finally breathe a little. Thank you so much, from the bottom of my heart. You made this sad sprout happy today. Best of luck to you, and let's both keep smiling.

[Kaliber in reply to Sadsprout]

Thank you for the flowers …. I’m a lot better, so to speak, than many people expect. State of mind and acceptance both go a long way making my life better. Once you’ve been in that wheelchair for a while ( for example )…. You don’t even think much about it anymore. My wife is an amazing caregiver and my current medical crew are amazing too. It all goes to making things much easier.

I like ….. love …..your plans to get dad out and make his remaining time fun and pleasant….. all the QOL activity helps him and you both. It’s just as cathartic for both of you.

❤️❤️❤️

[MarkBC]

Goedendag vanuit Canada. I saw from your profile that you are in the Netherlands. We spent three months last year living in Den Bosch and loved it there.

I was diagnosed almost 7 years ago, aged 55, PSA 103.0, Gleason 9, mets to bones and lymph nodes. Like your father, I was healthy and living an active lifestyle. I had no pain and no family history of cancer. I was having difficulty peeing and that is what led to the diagnosis.

Like you, I was devastated at the diagnosis. I went through a range of emotions and started preparing to die. It does get better with time and more knowledge. This forum was very helpful for me.

I followed a similar treatment to the one your father is on ... Zoladex, docetaxel, abiraterone. Chemo wasn't fun but it wasn't as bad as I expected. It really worked to knock my cancer down. I have just finished radiation treatment for two spots that recently appeared on my annual scans. For most of these 7 years, my PSA has been below 0.2.

Other than the ongoing ADT side effects, my life has been great. I try to eat healthy and exercise but I don't follow a strict regimen. Life has to be fun so I still enjoy an occasional dessert and a few drinks on the weekend (sometimes with homemade bitterballen 😀). My oncologists believe I still have a number of years left to live.

Do not despair about your father's diagnosis. Cancer teaches us that life is finite. None of us knows when we are going to die. Any one of us could have a heart attack or get hit by a bus tomorrow. As a result of my diagnosis, I have learned to appreciate each day and not to put things off for the future. Most of all, I have learned to cherish the time I get to spend with the people who are closest to me.

There is a great 20 minute YouTube video by PCRI called Understanding Prostate Cancer Prognosis. It was published about 5 months ago. I recommend that you watch that.

Veel geluk voor je vader.

[Sadsprout in reply to MarkBC]

Hallo Mark, en groeten uit Limburg!

Brabant is very beautiful, and I bet it's also a bit warmer compared to Canada. My dad has always said he'd like to go to Canada someday, so maybe this is a sign to make that happen! I went to university in Eindhoven and I enjoyed the years I spent there very much, so I can certainly imagine that you had a great time in Den Bosch.

I am so happy to read that while walking a similar path as my father, you have managed to keep your PSA very low these past 7 years. That has given us a lot of hope. You sound full of live and I hope that you'll live to add another 7+ more years to that!

Reading you mention how you still enjoy a little wine and something sweet every now and then makes me feel so happy. I was really feeling defeated after hearing the diagnosis, but everyone here seems to be so full of joy, hope and fighting spirit. It has really put things in perspective for me.

My dad has always told me that tomorrow is not promised and that you should live and enjoy life while you can. I always thought of it as ''old geezer mumbo jumbo'' (:P), but now I truly understand what he means. I will continue making great memories together and I will do my best to work out and diet with him as well. I hope that my dad can enjoy his little beer and some snacks in 7 years as well.

I'll watch the video you mentioned and I ordered some books that my dad and I can read together as well. Thank you so much for your kind reply. I wish you the best of luck with your diagnosis and I hope you can spend many more beautiful days with your loved ones.

Groetjes en heel veel succes en geluk gewenst!

[NecessarilySo]

I'm not a doctor but: every case is different; survival depends on treatment; and he must remove prostate and surrounding tissues; fight metastasis; Low testosterone is important. Diet can help. Exercise can help. Read. Think 10-20 years, not 2-5, unless metastases grow out of control.

[Sadsprout in reply to NecessarilySo]

Hello NecessarilySo, thank you so much for your reply. Your last sentence (''think 10-20 years, not 2-5'') really had a great impact on me. I know I might be acting a little silly but I'm really writing this with tears in my eye. You all gave me so much hope today, I am so thankful. I hope that we can fight it with the triplet therapy. If you have any recommendations that you'd like to share please do feel free. Best of luck to you as well.

[NecessarilySo in reply to Sadsprout]

I have been fighting my own battle for seventeen years now. I fight metastases on my own (with Lupron quarterly injections), and have eliminated most if not all. However, mine are or have been near the surface where I fight with heat. Did you know that 106 degrees F kills all cancer cells? Also lycopene is very effective with my own type of prostate cancer. Lycopene is in a lot of good foods that are tomato-based...catsup, tomato soup, tomato juice, V8 juice, etc. Also magnets can cure prostate cancer. I have a bit of experience in that. But what your father has might be a stretch for my methodology, as he probably has metastases in his pelvic region. That likely will require radiation or chemo.

[Sadsprout]

Hello everyone, I feel so overwhelmed and I am so thankful for all the kind words I received and the fantastic advice you have given us. I translated all the comments into Turkish, which is my dad's native language, and sent them over to him. He has been reading the comments and he seems a little bit relieved. You could never imagine how much you have helped us. Thank you so much.

[Concerned-wife]

I find UroToday an excellent source of discussions among the physician experts as well as the results of studies and new studies underway.

[Sadsprout in reply to Concerned-wife]

Thank you so much for the recommendation. Are there any interesting studies in particular that you have been following closely? I'll definitely check it out! Thank you so much and best of luck to you.

[kainasar]

Ive read a few experts recommend Provenge at this stage of the game, as part of the sequence for mets.

[OuttaTime]

There is something greater than cancer here! (A lot of things!) maybe a curse is a blessing, with sickness comes healing! Maybe healing in relationships!? Maybe in sickness brings us closer together is the blessing or we turn to the Lord that much more is the blessing!? There is something greater than cancer here! How we got here is not the issue but what we do with our precious time we have been given! There is something greater than cancer here! Maybe in our suffering brings about a greater love in all of us! There is no greater time than to love right now! Love heals suffering it is a good medicine! Suffering and Joy can co-exist!

Hello first and foremost what you believe in could save you. God has all power and through His gift of faith and my participation in that has helped me greatly to keep my chin up no matter what. I can go outside my door and down the street and see homeless people that are freezing and hungry with no place to call home no matter how they got there is not the issue. So there is always something to do for others that helps someone get out of themselves this helps a lot. So we do not have power over some or a lot of situations in our lives and we have to turn that powerlessness over to the care of God as we understand Him. Secondly there is no clock of our lives we can go by, only God knows that time. We can try to improve our circumstances with information that works and maybe doesn’t work all of the time. It is important I think to keep a positive attitude and environment around us in general for everyone. So we don’t know when we are to die. I think for doctors to suggest time of death is a crock it really is. One of my doctors asked if I wanted to know how long I had and I said to him only God knows the time we leave here that is his job. It is God who calls us out of here! lol! The doctors job is to improve our quality of life and longevity of life. If you think your doctor is assigned only to a palliative existence then maybe you should get a second and third opinion. There are doctors out there who are willing to put up a fight to this cancer. I have both a palliative doctor and a curative doctor and they are in conflict with their routes of therapy so I have to decide sometimes through gathering a lot of information what I want to do. Maybe that is one approach, to get both kinds of doctors, a palliative and curative doctor and gather lots of information outside of the doctors opinions. With that being said there is no known cure for advanced prostrate cancer that I am aware of but they are coming out with new therapies and trials and combination therapies all the time. I think a cure is on the horizon hard to say when though. But in the mean time there is a lot to do also to interact with groups like this on this chat to exchange information is key also. As far as chemo therapy with docetaxel it kicked my butt towards the last two or three sessions but I got through it. It is a poison that kills cancer it also kills good cells. I did all 6 sessions with two other drugs called triple therapy. I was diagnosed almost two years ago and my psa is undetectable. The palliative doc was saying he wasn’t totally on board with docetaxel triple therapy but my other doctor was so I went ahead and did it. My psa initially was I think around 700 when we first found out I had prostrate cancer give or take a few I would have to check my records it maybe on my bio. Now it is undetectable. My feeling is throw the book at it and see what happens. There are alot of tools I think to use against this cancer but as my palliative doc says I don’t want to use them all up at once some of them only have one time using them (fda approved) unless you can afford to buy another round maybe outside of the country. I ain’t there yet. One doc (curative) wanted me to get Lu-177 or pluvicto and my other doctor (palliative) would not approve it because I did not meet the criteria at his clinic so I did not get it yet unless there is firm data one way or the other. I don’t think the results to pluvicto have been so great yet but it depends where you look. I am currently on a Lupron shot every three months and currently taking darolutamide or Nubeqa orally 2x a day 2x 300mg tabs. You might ask your doc about those 2 drugs being used during or after chemo. I think I was on these after chemo but I will check. I will check my medications used and when. I think I was on the ones you father is on. I may have this info in my bio not sure. I will get back to you! I am still castrate sensitive vs castrate resistant. I have more to say hope this helps a little! Happy trails to you and yours! One thing I know or has me thinking is to try to put things in prospective or do things that have importance and meaning and try to not waste as much time and be a quality person to others not matter what! I still waste time I think but I try more to be a good person to others in light of what I am going through it may be a light to me as well! Docetaxel (triple drug therapy) well kick your butt so don’t worry about recovering from it they say for every 1 month of chemo you need 2 months to recover and I agree with that 100%. I would do it again if needed triple drug therapy with docetaxel.

[jfoesq]

I begin with this caution and then my advice. No 2 cases are identical and no 2 responses are either. It’s best to try and enjoy living every day and do one’s best to not permit the disease control one’s life. I am no expert on the subject but you can view my profile and see that I was Dx almost 13 years ago with several bone Mets, one lymph node met (that was removed at the time of prostate removal surgery) and a PSA in mid-40s before Lupron was initiated and followed up a year or 2 later with abiraterone. (Triplet therapy was not the SOC back then, so I have not yet been on chemo). At Dx, I thought I had an estimated life expectancy of 3-7 years. Thankfully I have responded well to treatment and I hope your father does the same. Good luck!

[j-o-h-n]

Greetings Sadsprout,

Well you're another sweet offspring here on H.E. who's very concerned about their dear Dad. We understand your concern and your angst and we are here to help you and to alleviate some of your concern. Be assured that with the new meds and new equipment being introduced in the medical industry your Dad will one day celebrate his 92d birthday. Keep posting here for information because it's a great place to find camaraderie for your dad. BTW what is your Dad's age and is he still working at a full time job? Regards and Thank you!

Good Luck, Good Health and Good Humor.

j-o-h-n

[GHTomato]

sounds similar to my condition. Had 28 sessions of Proton therapy at Fred Hutch.

[Professorgary]

three years ago I could barely walk. Mets in lungs, nodes, spine, pelvis, left femur, and ribs. Psa 5664 and I figured I had a few months tops. Now I live life virtually pain free. Lupron and abiraterone with dexamethasone. No chemo yet. And lots of praying.

God bless.

[Collarpurple]

this is the group that you never want to belong too, but you are now in. You found the best place to talk and ask question about this crappy disease. At first you’re gonna feel like you can’t breathe and life is over. But then you realize that’s you’ve got to fight the battle for father spouse, uncle brother, whoever.

Truly this is the site that saved my sanity. Some of the men are still on it, and some have passed on.I should say my husband has C but I sort of have it too. He still here after almost 7 years. We’re now in a different stage dealing with chemo nowIt’s a lot to take on but with help from these guys you’ll be OK