My dad was tested last fall and no signs of prostate cancer. In may he did the PSA blood work and it showed up positive. The doctor "forgot" to send it to a specialist for two months. Then the specialist had covid for 2 weeks then went on vacation for 3 weeks. After all these delays the bonescan was finally done and they found out his prostate cancer had spread to 4-5 places in his bones 15-October-2022. The doctor said when the cancer has spread more then 4 places there's nothing they can do. I refuse to believe this.
From my research i've found the following things to talk to the oncologist about. Am i missing anything that i should ask? What else can i do? Have you guys tried anything else that has worked to beat stage 4 prostate cancer? Any additional information/sources/questions you can send my way would help greatly. His appointment with the oncologist is tomorrow.
1) I've read a bit on genetic testing, 177Lu-PSMA-617, signal transduction, angiogenesis inhibitors and apoptosis-inducing.
2) Stem cell therapy to fight cancer in bones.
3) Genetic testing for hereditary prostate cancer genes (ATM, BRCA1, BRCA2, etc.). There are targeted therapies, such as immunotherapy in PARP inhibitors, that have proven to be helpful in treating metastatic prostate cancers in people with mutations in certain genes.
4) Triplet therapy with the oral androgen receptor inhibitor darolutamide plus docetaxel plus androgen-deprivation therapy significantly improved overall survival in patients with metastatic hormone-sensitive prostate cancer vs docetaxel plus androgen-deprivation therapy
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MarcinCanada
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Your doctor saying there is nothing they can do is silly. There isn’t a cure for metastasized prostate cancer (and trying to research one is the part that drove me the most crazy), but there are plenty of things to do. My husband had bone mets when diagnosed 3 years ago, and he went with radiation, adt and zytiga. He is now off all treatment for a limited break while his PSA slowly rises. Some of the things you listed won’t be brought up as options until ADT has failed.
The beginning of this diagnosis is the worst. You hear and read tons of terrifying things about life expectancy, and you can navigate some surprisingly incompetent medical professionals at first. But at the end of the day, starting prostate cancer treatment is pretty standardized as far as the options and when to do them, and depending on your fathers health and wishes they will probably push for aggressive treatment and triplet therapy. It’s when all ADT fails that treatment becomes more complicated.
I’m linking below a thread here from a few days ago with a bone met positive man who was told he had 3 to 5 years (which is also nonsense). It’s a great one and I strongly recommend reading the comments.
I hope your Father is taking a full range of supplements. I am 22 years out from my radical. My PSA before surgery was 39.5 with a 4-3 Gleason. Why I am still here I don't know,but here I am. Ihave taken Vitamin D 4,000 units per day plus a shit load of other vitamins and a diet VERY LOW in sugar. Lots of veggies and not much fruit. Love my meat !
they basically told him because it had spread to 5 places they wouldnt be able to make the cancer go away so radiation / chemo wasnt an option. they said the only option was to take hormonal therapy to slow the progression to try to give him 5 years. Does this make sense what the doctor is proposing?
I had a doctor tell me the exact same thing at the beginning. He was a couple years behind recent studies (this was 3 years ago). We went to a better institution after talking to him with more up-to-date oncologists, and they even gave us the option of surgery to debulk the cancer (we went with radiation instead).
I’m not an oncologist, but anyone I’ve read here, and from my own experience, they treat the initial tumor now- even in metastatic disease.
I hope an actual oncologist has more to offer you. There are tons of threads here with men in your fathers exact situation, that go into detail on their treatments and that link relevant studies. Chemo being started “early” is a rather new thing, and some opt for it and some don’t. We didn’t because my husband is very young and unwilling to deal with the permanent side effects until he has to.
Point being, there should be a discussion with a good doctor about potential options and the most up to date treatments and studies, not a proclamation of what he has to do with a countdown of 5 years or less. He should be given options of how aggressively he wishes to treat his cancer.
If it's any consolation, metastases take a long time to become large enough to be visible. It didn't happen within the few months of delay.
While his cancer is incurable, it may be managed as a disease he can live with for a very long time.
Triplet therapy (#4) is the latest innovation. I have not heard if it's available in Canada yet. Possibly with abiraterone rather than darolutamide?
There is a clinical trial for Pluvicto in newly-diagnosed men with metastases. Unlike Triplet therapy, there is no proof yet. But there are several sites in Ontario and Quebec:
He can and should have a germline (saliva or blood) genomic test.
Because your father is newly-diagnosed, and still hormone sensitive, medicines like PARP inhibitors, etc. are not approved for him. Stem cell therapy is not used at all. Angiogenesis inhibitors have been tried and found to be useless.
If triplet therapy is not an option for you (as it's not for me in the UK on the NHS), I would encourage you to try to get on that PSMAddition trial. I was very interested in it but by the time I found out about it, I'd already been on ADT for over 45 days which is the maximum limit allowable to join the trial. Good luck with whatever treatment you have.
mskcc.org/cancer-care/clini... I'm not sure if we have this trial available in Canada. My husband is in the Amplitude study which is for BRCA mutation.
Hang in there! Some of us just have sneaky cancers that evade testing until they’ve gone metastatic. My PSA was 1 last winter, and then they found stage 4 with multiple bone mets in August.
Even here in Southern California it’s taken weeks to get scans, and by the time I get a bone biopsy next month it will have been 6 weeks since it was ordered. My only treatment 9 weeks after diagnosis has been Eligard (hormone therapy).
The delays are frustrating, but as long as he’s started ADT (hormone therapy) the delays give you more time to do your research and look for quality doctors.
Hello Marcin. The first report will hit you very hard. But stay calm. Do your home work. As others comment here, there are tons of info on the web about cancer in general and PC in particular. It is not as grim as it sounds even 10 years ago. Look for a good onco, one who has lots of experience. What is the system in Canada? In UK the NHs is not too generous. Going private is very expensive, If your insurance allows you to go to USA or other countries you should look them up. You get scan, blood test etc in morning, start treatment same day in afternoon. All the best to you are your Dad.
wow, so sorry to hear your dad has joined our army😢😢. Sounds like the perfect battle to me, a dip s##t of a doctor that doesn’t know what he’s doing and lots of lost time 🤬. Listen to the oncologist,he will have your dads health in mind when you talk to him. My stage 4 diagnosis was similar, I did Taxotere chemo with ADT. And then to Xtandi. 6 years and counting. Good luck 🙏🙏🙏🙏
Hoping the oncologist you see is more up to date with orientated cancer than that other doctor is. There are lots of things to do for your dad's diagnosis. As you listed and comments show. My husband was 49 years old and told 12-18 months to live by his urologist at diagnosis- totally untrue for him. My husband is now over 5 years out- still works, works out, surfs.... totally enjoys life- even with extra fatigue and a few other side effects from cancer and meds. someone should be with your dad at all appointments to take notes and be another set of ears. Your dad won't be cured- but many men live years and manage the cancer.
I was given the same dx back in 2014, still here and doing well. You can click on my profile to see what I’ve done for treatment. It’s important to find an oncologist who specializes in prostate cancer and stays informed about current treatment options.
I would agree that the three month's delay probably didn't make much difference. Prostate cancer takes years to develop and to get to the bones suggests to me that several years passed before it was discovered. I would also agree that androgen therapy can slow down the growth of the cancer cells so that he can live longer. And furthermore, I believe there are things he can do that can reduce the cancer that has developed.
Check my own history and you will see that I learned of the prostate cancer very early and developed metastases four years after radiation therapy to prostate. I am now nearly eleven years since stage 4. I realize that is rare but I have done several things beyond the standard care androgen therapy, including lycopenes in diet, heat locally applied to met sites, and magnetics applied to mets. I will explain further if requested.
is it normal that his psa was at 1 last fall 2021 and all of a sudden in may when he did the psa test again it was aky high? If he had cancer for years shouldnt the blood test have detected it in 2021?
Your father is similar to my case. Did you see my reply above? My PSA was 1.1 last fall, then 9.75 in July and stage 4 cancer with bone Mets in August discovered.
Some of us are just unlucky that way.
I think doctors have become too reliant on PSA as the only thing they need to check for regards prostate cancer. I’ll wager that both your father and I would have been discovered much earlier if we had had a digital rectal exam by a Doctor that knows how to do them properly. My last DRE was at least 5 years ago, maybe more.
On the other hand, maybe we just have super aggressive cancers that went from nothing to stage four in less than a year… stressing over that is not what we should be worried about now, focus on addressing what’s in front of you now
Generally speaking heat over 106 degrees kills cancer cells without killing normal cells. Go to my profile and check some of my posts. Magnetics I have tried but with limited success. I think magnets can kill or somehow reduce metastasis but with limited experience I wouldn't recommend it. Lycopenes are what makes tomatoes and other fruits red or yellow. They are powerful antioxidants. Here's an article but I suggest you research the subject to your satisfaction.
I have not tried that. I have read that hospitals do that in conjunction with chemo. I have used 1 minute 110-degree showers locally on back and neck lymph nodes, rib, spine, and skull lesions. Deeper and larger metastases might require longer periods such as sauna or hot tub imo.
Would you share this doctors name? Maybe we can write to this individual by snail mail or email him and inform him he should be disbarred or educated that there is procedures that can be applied. We have to keep fighting even when doctors won’t take the time to join the battle.
MarcinCanada I’m assuming you/ father and the doctor are from Canada?
I am 10 years plus with metPC in a 4 bones and 1 lymph node, which was removed. Everyone’s case is different because of age, overall health aggressiveness of the cancer, diet, exercise…. Some people respond to treatment very well and some, unfortunately, not so well, with many others falling in the middle. Some patients on this page have gone 15 years and I bemusement have been around even longer. I have only been on Lupron and Zytiga but had I been DXd today, I might have been placed on triplet therapy- which would’ve added chemo to the other 2. TallAllen is an AMAZING source of information. But- I would be a bit skeptical of those who push certain diets and supplements which may not have scientific support for the claims being made. Hopefully, your father will have a good response to treatment. Best wishes
I’m sorry Marc ,about dad! My dad had this also . Check yourself at 40 . I didn’t .. “ nothing we can do “ is BS. My doc said some stupid things too . Like I’d be dead in 36 months no matter what I didn’t . Don’t take a negative doc to heart . They should never say something like that to anyone . Even if they belive it ? I don’t . . It’s wrong . How old is dad? Great job helping him out here . Try not to overload on tmi. It’s easy to do . You will do what’s best for him . Having you on his team is in his favor. Great job ! Love him much .. we suffer with this . Some have lived for decades beyond #4 ..just keep him up and positive .. when he feels at his worst it’s good to get him up and walking . Good luck son! 🙏💪
Find a good urologist. Find a good oncologist. My husband was diagnosed with prostate cancer in his early 60’s. It had gone to his bones. Hormone therapy immediately. Soon after he had chemo. All seemed to being going very well. Numbers were good. So don’t let a doctor give up so quickly. For 5 years after chemo, things appeared to be great.
My only “however” is that after all going quite well, my husband had his Covid vaccines. Within 4 months, he passed away. Stage 4 cancer…in his liver. Can never prove it, but I think if he hadn’t gotten the shots, he may still be with me.
So may all go well for your dad. God bless him throughout the battle…and his family.
It was from the prostate, they said. The day before his second shot, he was on the floor playing with his granddaughter. The day after the shot, he was fatigued. We thought just a side effect. He never recovered from that. When eventually went to the doctor for it, bam! stage 4 in his liver. In less than 4 months from the day of his second shot, he died.
A coincidence? I’ll never know.
I heard the same story of a young woman with breast cancer. Doing okay…got the shots, and it showed in her liver. She is still fighting.
Hello Marcin, I am a fellow Canadian with a similar diagnosed cancer. I was diagnosed
with stage 4 bone mets all aver my skeleton and Gleason 9. I am surprised your doc said he
cannot do anything. That's stupid. My onc stared me on ADT. Here I am 8 years later fighting the good fight. You cannot be cured but your disease can be controlled for as long as possible. I don't know where you live in Canada but we have some of the world best cancer
treatment centers In Princess Margaret(Toronto ) and Sunnybrook (Toronto) also B.C and
Calgary that I know off. So be positive and change your Doc if you have too. Started on Zoladex for 3 years later added Extendi to date. Total 8 years.
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Stage 4 advanced Prostate Cancer
Dad with new diagnosis of stage 4 prostate cancer
Recently diagnosed with stage 4 prostate cancer
Stage 4 Prostate Cancer
