Prognosis for Stage 4 Metastatic Prostate Cancer

Posted by phil89 @phil89, Jan 16 1:08pm

Good afternoon, and thank you to any one in advance who is reading this and is able to offer any insight/similarities with their journey.

My dad (68 yrs) started experiencing crippling pain in his back this past May, that led to him being almost completely immobile. He was ultimately diagnosed with Stage 4 metastatic/advanced prostate cancer, with metastases to his pelvic and abdominal lymph nodes, as well as to his bones. His Gleason score was 9 at the time of his biopsy, and his PSA level was 800 ng/ml.

For treatment, he has received a total of three shots of Luteinizing hormone–releasing hormone (LHRH) which he will receive indefinitely, is presently taking Darolutamide (Nubeqa), and underwent 6 cycles of chemotherapy (Docetaxel) which he completed in December. They did a round of scans halfway through his chemo and told us that although the cancer seemed to be responding to the treatment (thank goodness!), it was incurable and will eventually find its way around the Darolutamide, hormone therapy and chemo. After chemo my dad's paralyzing pain was reduced to what he described as mild discomfort, which was a huge relief. His PSA settled at 5 ng/ml in the end.

About a week ago, my dad sat me down and said that he did not want to worry me, but admitted that pain seems to be coming back in a way that is progressive and more continuous. He is really worried he is going backwards, but this has not yet been confirmed and for now we are just trying to manage the pain. He has another round of scans (CT, bone scan and blood work) scheduled for next week, and now I am feeling concerned with what they may find.

I am not really sure what to ask, or how to ask, but I am just wondering if there is anyone who can give me some insight on whether they have had a similar experience with pain returning after chemotherapy, and how they managed it.

Finally, my dad's oncologist has been hesitant to offer my dad an honest prognosis, and just keeps saying "it depends". My dad is 68, and does have a history of congestive heart failure (2017), but is healthy otherwise (no diabetes, not overweight, gave up smoking 20 years ago). I know it may potentially be difficult news, but would anyone looking at the information I provided be able to let me know honestly what they think his chances are at living another 5 years or more?

Thank you again, Phil

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@northoftheborder

I did ask "how long" when I found out about my oligometastatic prostate cancer. The initial answer was that it's typically around 4–5 years, but because I was young (56 at the time) and relatively healthy otherwise, possibly 6–7 years.

Now, 2½ years later, they're not setting an upper limit any more, and saying it might be 10+ years before I need any additional treatment (like chemo), although I know there are no guarantees, and I'm always just one blood test away from bad news.

They're still collecting long-term data on newer treatments and approaches not, so the real answer is that they just don't know yet.

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Apparently there is a study now by Xtandi. That found that the recurrent rate at 5 years is
10% if treated with Xtandi plus ADT
20% if Xtandi alone
30% ADT alone.
For the 10% after 5 years they can go on to other treatments.
There is as yet no study result that includes chemo as the third leg of the triplet. But doctors do seem to believe there is benefit. How much?
We all wish they do the study.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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I've been stage 4 for 10 years after being diagnosed at 52. Had too many treatments to list all. I no longer have a prostate which was removed at 52 years old with metastatic bone cancer and a Gleason score of 9. Have the worst type of aggressive prostate cancer, I was told. Here I am 10 years later Going strong. I'm currently on Jevtana and prednisone and have had about 25 rounds at 3 week intervals. The only major side effects is fatigue. The most pain comes from the nuelasta shot the day after. I have a great team of doctors here in NE Ohio and a strong mind. I will die with it and not from it. By the way, my PSA sits at 30 and it goes up and down like a roller coaster.

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@drmccoyce

I am about to be 77 in a few months!
Have been dealing with prostate treatment since 2012, 45 rounds of radiation and Lupron injections. 2021, my PSA begin to start increasing, my Oncologist who has been treating me since 2012, he did biopsies and found nothing, we waited a few months, checking each month, my PSA continued to rise, after a couple months, I received an emergency call and was scheduled for Hemotology, had several body scans, brain scans. Cancer had spread up the left side of my body to my head, fortunately had not touched my brain. Consultation resulted in me having to choose an oral treatment that I take myself at home: Abiraterone 1000mg daily and Prednisone 5mg daily everyday, can’t miss a day. I’m still taking Lupron injections every six months: side effects are fatigue, like of engery, weakness mostly. The Abiraterone meds spikes blood pressure, therefore I had to began blood pressure meds. These meds have benefited me tremendously. There are occasional dizziness or light headed side effect, but nothing serious. It is suggested to take theses meds during wee wee hours to minimize discomfort. If the meds are difficult to tolerate you can request a decrease in strength. After three months of being on 1000mg of Aberiterone, it was working so well, my request to decrease to 750mg was agreeable. My PSA went from 356 to 38.6 in three months. I have been diagnosed as Stage IV Prostate Cancer, metastasis incurable. Your Dad can benefit from the proper treatment.

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Look Into Radium 223 if bone Mets else Lu 177

On 223 after xtandi failed in 12 months

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I think chemo with the up-front "triple treatment" for stage 4 is used only if there are lots of metastases and/or the cancer has become castrate-resistant.

For castrate-sensitive oligometastatic prostate cancer, I don't think chemo would make sense at the start (radiation + ADT + an androgen-reception inhibitor like Apalutamide get the job done), but interested to hear from anyone who's seen otherwise.

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@northoftheborder

I think chemo with the up-front "triple treatment" for stage 4 is used only if there are lots of metastases and/or the cancer has become castrate-resistant.

For castrate-sensitive oligometastatic prostate cancer, I don't think chemo would make sense at the start (radiation + ADT + an androgen-reception inhibitor like Apalutamide get the job done), but interested to hear from anyone who's seen otherwise.

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Dr. Scholz put it this way. Chemo represents another path to deal with the cancer cells, by disrupting it's DNA etc. Intuitively, it should enhance the cure rate. So perhaps it will reduce that 10%? Is it worth it? Perhaps that is a matter for the patient and his medical team.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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@robert570

I've been stage 4 for 10 years after being diagnosed at 52. Had too many treatments to list all. I no longer have a prostate which was removed at 52 years old with metastatic bone cancer and a Gleason score of 9. Have the worst type of aggressive prostate cancer, I was told. Here I am 10 years later Going strong. I'm currently on Jevtana and prednisone and have had about 25 rounds at 3 week intervals. The only major side effects is fatigue. The most pain comes from the nuelasta shot the day after. I have a great team of doctors here in NE Ohio and a strong mind. I will die with it and not from it. By the way, my PSA sits at 30 and it goes up and down like a roller coaster.

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I’m from NE Ohio who r you seeing your doing great Dave

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@wellness100

Dr. Scholz put it this way. Chemo represents another path to deal with the cancer cells, by disrupting it's DNA etc. Intuitively, it should enhance the cure rate. So perhaps it will reduce that 10%? Is it worth it? Perhaps that is a matter for the patient and his medical team.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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Yes, absolutely it's between you and your medical team.

Since my treatment has kept my PC totally inactive for 2½ years now (undetectable PSA), my onco team and I are happy to hold chemo in reserve for the future, rather than using it now when there seems to be nothing active for the chemo to fight (maybe a relatively few deeply dormant cancer cells hiding out among billions of healthy ones).

The videos I watched about the triple treatment referred, I think, to castrate-resistant metastatic prostate cancer or non-oligo-metastatic PC, but I might be misremembering, and also, of course, I'm a layperson as well.

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@marciandpaul

Hello. My husband was diagnosed in 2021. He was 52 at the time of diagnosis. He has always been one of the most active and healthy individuals I have ever known. He ran many marathons, including Boston so he was fast, never ate anything unhealthy, never smoked, rarely drank and exercised daily, but has a family history of prostate cancer - both brothers, his dad and uncle all had prostate cancer and one brother at the age of 40.

Nobody in his family ever had prostate cancer spread outside of the prostate, except my husband. And all family members who had prostate cancer had their prostate removed.

At diagnosis my husband’s Gleason was a ten and he was informed he has an aggressive form of prostate cancer.

After he had his prostate removed we were informed that the cancer had spread to his lymph nodes.

This was devastating. Stage 4 metastatic prostate cancer at age 52. We have three children and have been married now for 25 years.

He underwent radiation for 33 days and then two years of hormone therapy. aberaterone, daily steroid and lupron. He felt bad. Not himself, very limited energy and frankly depressed. It was a very difficult time for him and our family.

Fast forward and he is now three years out from initial diagnosis. He has been off the hormone therapy for one year. His PSA is undetectable. He has more energy now than he did during treatment and we are thankful that so far his cancer has not come back.

This diagnosis has forced us to live life by the day. Nobody knows how long we all will have. We have good days and then some days are full of worry and asking what if.

We are thankful for the time we have now. My husband has plans to do some things he would otherwise put off for later on in his life had he not been diagnosed with cancer.

He’s going to run the Grand Canyon from rim to rim, in the fall. Even if the definition of run may include several breaks in between to stop and rest.

I read these posts weekly and it helps me to hear your stories.

Enjoy the day today. The present is really all anyone has.

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@marciandpaul, I really appreciate your sharing your story. It gives hope to others, especially those who were diagnosed at a young age like @cedard @john57 @mike1367 @voodoo5500 @jap57 @cupman @robert570 @tbmrebel who shared their age in this related discussion:
- What is the average age of the gentlemen on here?
https://connect.mayoclinic.org/discussion/what-is-the-average-age-of-the-gentlemen-on-here/
Marcia, it must've been so hard to watch your husband to essentially become a shadow of himself while in treatment. What a miracle that he is now training to run the Grand Canyon rim to rim. That's a feat that many (most?) wouldn't take on. Do you train with him or are you cheering from the proverbial bleechers?

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@colleenyoung

@marciandpaul, I really appreciate your sharing your story. It gives hope to others, especially those who were diagnosed at a young age like @cedard @john57 @mike1367 @voodoo5500 @jap57 @cupman @robert570 @tbmrebel who shared their age in this related discussion:
- What is the average age of the gentlemen on here?
https://connect.mayoclinic.org/discussion/what-is-the-average-age-of-the-gentlemen-on-here/
Marcia, it must've been so hard to watch your husband to essentially become a shadow of himself while in treatment. What a miracle that he is now training to run the Grand Canyon rim to rim. That's a feat that many (most?) wouldn't take on. Do you train with him or are you cheering from the proverbial bleechers?

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Thank you, Colleen. I appreciate your reply. My husband will train and run alone. I only walk but will be cheering him on.

Thank you for bringing the age discussion to my attention.

Thanks for connecting.

Do you work for Mayo Clinic or have a loved one affected by prostate cancer?

Marci

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@marciandpaul

Thank you, Colleen. I appreciate your reply. My husband will train and run alone. I only walk but will be cheering him on.

Thank you for bringing the age discussion to my attention.

Thanks for connecting.

Do you work for Mayo Clinic or have a loved one affected by prostate cancer?

Marci

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Both. I work for Mayo Clinic as the Community Director of Mayo Clinic Connect. My father-in-law and my uncle both have prostate cancer.

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