I’m looking specifically for men and partners of men who were diagnosed with de novo stage four prostate cancer at their initial diagnosis. The treatments are different and unfortunately so it the overall outlook. The younger men are diagnosed with PCa, the more aggressive the cancer tends to be.
I would be grateful if you could respond with your date of diagnosis, how many tumors you had, if you are considered oligometastatic, where you are treated, what treatments you’ve had to date and most importantly, how do you feel? No sugar coating it. The more blunt and honest the better.
I’ll start, my husband was 48 at diagnosis, stage four and had two types of chemo (carbo/taxotere) and after completion did over 30 rounds to his prostate and left hip (two main tumors). They thought he had a recurrence so did six more radiation to his spine. Turns out it wasn’t, it was a fracture.
Currently on Lupron twice a year, Zytiga, prednisone and Evenity (bone strengthening injection). We are in Israel treated at Hadassah. We have four kids ages 12-18.
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Vegasborn
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I was diagnosed with stage 4, Gleason 9 on my 50:th birthday. Cancer advanced outside of prostate + in 5 lymph nodes.
I had…
* ADT (Lupron and Abiraterone + Prednisolone).
* Docetaxel chemo. Needed Filgrastim shots due to low white blood cells.
* Operation to remove part of bladder. Did self-catheterization for a year.
* External Beam Radiation treatment on prostate and lymph nodes.
Stopped Lupron a year ago, and Abiraterone 6 months ago. Was on ADT for two years and it was really rough on me. I’m normaly around 180 pounds (5'11) and fairly fit. At the two year mark of ADT I was down to 110 pounds and miserable.
Feel fantastic and healthy right now and enjoy life. Work out and do yoga every day with my fantastic wife and we just booked a trip to Portugal (I’m in Sweden).
But - I’m due for bloodwork and scans in March after which I most likely will be on some treatment again as my PSA is rising. Try my best not to think about that at the moment.
Man that’s rough sorry.. sounds like things are looking better though hang in there! I’ve been to Portugal very nice hope you enjoy. I haven’t been to Sweden but would love to visit. I ordered a Murphy bed from Sweden and had it shipped to Japan awesome piece .. wish you well .
diagnosed at 50, PSA 70, gleason 10, ATM mutation, lymph and bone metastatis, high burden, not oligometastatic, no symptoms...not a nice outlook but I try to stay positive.
I have been treated as per ARASENS protocol: docetaxel + adt + darolutamide with a good response as my last PSA was 0.39 ng/L after 6 months from diagnosis
now I continue with ADT + daro + zometa (for my bones)
My husband was diagnosed in September 22, when he was 51 with Gleason 9, T3b (broken through seal of prostate and in both sides of seminal vesicles) N2, in 2 lymph nodes and M1 metasized in 4 places (pubic bone, left rib, lumber lower back and throtatic spine), small deposits.
He was experiencing getting up during the night to pee, so went to the doctors, referred to hospital, biopsy, bone Scan and 2 weeks later diagnosed with stage IV. It was completely devastating for us, he has never been ill. He had genetic testing but this did not show any evidence of it being genetic. His PSA was 210.
He started:
Biculatimde for 4 weeks
Prostap injections, (PSA dropped to 1.06)
Docetaxel chemotherapy from November 22 to March 23, 6 sessions with (PSA dropped to 0.1 after 1st chemo)
Prednisoline each morning for 5 days before chemo
Filgrastim injections for 5 days after chemo (to stimulate bone marrow to produce more white blood cells).
3rd chemo PSA was 0.04
6th chemo PSA 0.01
Prostap injection every 3 months PSA has remained at 0.01 (now 17 months on)
He managed chemotherapy and was generally ok, he went back to work in May 22 and since then has just had some side effects from the ADT, i think the hot sweats are the most annoying ones.
We live in the UK and his treatment has been really quick and good, we haven't had to wait any long periods for any of it.
We are pretty much back to a new normal (our kids are 24 and 18), managed 4 holidays last year (Scotland, France & 2 trips to the Canary Islands), he is keeping himself fit, eating healthy and takes supplements that I researched which have anti inflammatory agents.
We have attended a few online webinars with other men who have Stage IV PCA, run by the NHS research hospitals, we have met men who have been stage IV for 14 , 16 & 18 years and are still living well. We are learning to live with it and doing everything we can to live our lives, because life is for living.
Its always there in my mind but we (wives, partners) have to be strong to be able to support our men.
I wish you the best .. your husband is so strong to be working .. ADT is tough on it now ..any exercise plan will help side effects .. fortunately don’t have to work now but understand how difficult that must be maybe good to keep your mind off stuff. Yes stage 4 diagnosed are doing quite well now .. advancements are always happening too.. take care !
I am sorry to hear this and wish your husband and your family the best of luck. My husband was diagnosed 12 months ago with metastatic prostate cancer. The diagnosis took six months, because the biopsy was a Gleason 6, with 1/12 samples showing a relatively slow-growing cancer. Finally, the PSMA scan showed extensive activity in many places, including a lesion in his sternum--so clearly, this was not a Gleason 6! The results of the biopsy were probably inaccurate due to the very large size of his prostate. He has been treated with Zytiga, prednisone, and Eligarde (every three months) since then. His PSA has gone from 51 to .05 and his last scan two weeks ago wasn't totally clear, but much better, and the bone lesion was gone. he complains of fatigue, but has an excellent appetite (too excellent) and is hanging in there. He is much older than your husband, so I don't know how helpful this is.
I was 51 at diagnosis. I could write up my whole journey here but that would take lots of space. I recommend that you look at the bio in my profile instead as it is pretty complete. Best of luck to you and your husband.
while I can’t respond to all of your questions I was diagnosed in December 2005 had a robotic surgery and remove my prostate and January 2006.
I was good for a couple years and the cancer came back. I did seven weeks of radiation. I was good for a couple more years and it came back again I had seven more weeks of radiation and then they put me on Zytiga and Lupron for two years. Starting July 2018, as of July 2020 I’m stabilized with no evidence of cancer.
Obviously, the prescribed treatment and what I went through worked because I am currently no evidence of cancer
My risk assessment starts with whether the cancer is limited to bone or soft tissue especially if oligomets have escaped the prostate capsule. The later imo is more problematic as the tumour may have adapted heterogeneously. The formers risks vary with whether sclerotic or lytic. Lytic again are more trouble especially wrt bone strength. Lytic cancers have the opportunity to mingle with stem cells which intuitively poses another risky scenario.
As to my own history. I responded quickly and extensively within weeks to ADT when at the time not considered ideal. I see it logically..homogeneous tumours are more likely to respond to treatments that show early promise . In my case the extensive bone cancers I had developed were largely alleviated with bicalutimide..a very good ADT indicator. I was shifted to Eligard which I continued with til now having dropped Zytiga last year after 4+ years.
I feel my joints suffer with long term ADT and I continue to use prednisone intermittently as a mitigation.
Hope this helps
Btw…because I live remotely with limited medonc input I’ve largely explored various unproven options. I’ve used reported bieffective vaccines meds and other homeopathics that haven’t hurt my case at the very least.
Diagnosed in May 2020, aged 53, PSA was 1311. Metastatic over 5 places in bones and in lymph nodes, so not Oligometastatic. They wouldn't radiate due to spread.
Casodex first 4 weeks plus quarterly Lupron (Prostap) injections and Enzalutamide since July 2020. So over 3 and a half years in, now aged 57, PSA has dropped to and remained at 0.03. UK here. Added Alendronic Acid to strengthen bones. Some days fatigued. Have fractured a toe that has not healed but otherwise try my best to walk often and do voluntary work. I retired pretty much on diagnosis as couldn't concentrate. Good luck to your family.
THat's a really harsh diagnosis at that age. Sorry to hear. Diagnosed stage 4 metastatic 3 years ago at 67. Out of the blue. PSA 225. Bone mets. Too many to count. Spine and pelvis.
Started on 3 month Lupron and Abiraterone/presidisone immediately. Luckily, little side effects. PSA came down nicely over 10 months. Mets got quiet from visible from scans.
But PSA plateaued at 1.5. And eventually kept going up. Diagnosed as castrate resistant.
Switched to Nubeqa and stayed on Lupron. No visible side effect change. Well, except for having no T. lol. PSA stabalized then began to rise again. A few old mets lite up. But no new mets, or disease progression.
Im at UCSF San Francisco. World renown department...with Dr Eric Small...renowned as well in advanced crmPCa.
Went on clinical trial in October at UCSF. One of the few options pre chemo. For46. Had to Switch to Enzalutamide for trial. No side effects. No side effects 1st 3 infusions. But then went to shit and worse after 4th. Now paused and probably leaving trial.
But to my knowledge, not from Lupron, which I'll probably be on the rest of my life, or the other three meds. Current PSA @25 and no progressive disease as of last bone scans.
diagnosed with stage 4 in october 2022 at age 70, Psa 84 . Gleason 9 then changed to 8. Too many bone Mets to count in spine, pelvis ribs etc. started degaralix October then Lupron novemver 2022 then zytiga Jan 2023 then lu177 in clinical trial Jan 2022.
Completed all 6 lu177 treatments spaced 6 weeks apart. By march 2022 psa 0.1. By may 2022 psa undetectable where it has stayed until today. 5 bone scans show continued response to treatment.
My treater says outcome so far is best he could have hoped for
My husband was diagnosed at age 59 on October 27 , 2023 after prostate biopsy with Gleason score of 9. Positive for BRCA2 ( found out on Feb 15 ) Last PSA was done in May ( 2023) and was 4.13 , was referred to Urologist due to a long time issue with peeing ( slow stream and getting flow going) . Previous prostate exams and PSA's past few years never showed any concerns . Bone scan confirmed mets to rib , shoulder and several in pelvic area . Started on Zoladex and Nubeqa and chemo ( Doxetaxel) . Hormone therapy started on November 29 and chemo started on January 4, 2024. PSA was done again before hormone treatment started and was 35 , PSA after 5 weeks on hormone treatment down to 2.79. After 1st chemo PSA down to 0.45. PSA # 2 chemo was 0.27. Chemo has been rough but also unsure if some side effects are not also from the hormone treatments. Is currently trying 37.5 mg of Effexor for the brutal hot flushes that them seemed to ignite ( may also be the zoladex kicking in ) the Effexor has helped with the hot flushes and he is finally getting some sleep. This has been a brutal shock to us both as he was very healthy and on no medications and no medical issues up to diagnosis besides peeing issues which his doctor always said was enlarged prostate ( even though exams only showed slight enlargement ). I think this has been harder on me because I'm learning and do see all the different outcomes of this. I'm trying to not focus on that and live life with him to the best . Wish you the best
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