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

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

digger | @digger | Apr 17 10:20am

We live in New Springfield I go to Cleveland Clinic,we are snow birds still in Florida they just found I have a mass on my liver had a biopsy yesterday there pretty sure it’s prostate cancer I’m on pluvicto was supposed to get my fourth treatment on the 24th of this month. I guess they’re planning on stopping the treatments they don’t think they’re working I’m still not sure why. you know some of these doctors? You can’t keep him in the room long enough to ask him questions, you’re probably leaving to come home by the end of the month. He said it takes 5 to 7 days to get the biopsy results. There’s supposed to be a trial that I might be able to get in. We’re working on checking into that. Keep up the good work, Dave.

robert570 | @robert570 | Apr 17 8:20am

In reply to @digger "I’m from NE Ohio who r you seeing your doing great Dave" + (show)

Dr Chahine St Joseph Cancer Center in Warren, Ohio

northoftheborder | @northoftheborder | Apr 17 5:56am

In reply to @colleenyoung "@marciandpaul, I really appreciate your sharing your story. It gives hope to others, especially those who..." + (show)

When I was diagnosed, my onco team told me that there are basically two prostate cancers: the type everyone knows about, that develops slowly into old age and you often die "with" instead of "of"; and the type that develops quickly and often isn't detected until it has already metastasized.

The second type, as I understand, represents about 1/20 prostate-cancer cases, typically hits young (late 40s to early 60s), and is becoming more common since the CDC and other health orgs recommended scaling back on routine annual PSA screening from age 50.

It's too bad the two diseases have the same name, because those of us with the aggressive type have to struggle against so many wrong assumptions. No, I'm not too young. No, it doesn't develop slowly. Yes. it is dangerous. Yes, we should be screening everyone who has a prostate from at least age 50. Etc. etc.

wellness100 | @wellness100 | Apr 16 11:47pm

In reply to @northoftheborder "Yes, absolutely it's between you and your medical team. Since my treatment has kept my PC..." + (show)

May be the answer to that are two fold. First, you dont know how you respond to the treatment. As it turns out, everything is fine. Chemo is kind of like an insurance.
Second, Dr. Scholz, Dr. Kwon and others will say that if you hit it hard the first time, the chances of it coming back is less. It is counter intuitive, but that seems to be their experience.
Thanks for sharing.
Dont mind me. I am just another layman trying to make some sense of the whole thing. Thanks for sharing.

hbp | @hbp | Apr 16 9:47pm

Marcia and Paul. Rim to Rim without an overnight at the bottom is very difficult. The north rim is much higher and more difficult than the south rim. Have you considered doing the south rim and if that goes well then doing rim to rim next time. Rim to Rim is difficult for guys that have not loss muscle due to PC and logically, more difficult as one ages and loses muscle. Good luck and play safe!

Colleen Young, Connect Director | @colleenyoung | Apr 16 8:58pm

In reply to @marciandpaul "Thank you, Colleen. I appreciate your reply. My husband will train and run alone. I only..." + (show)

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.

marciandpaul | @marciandpaul | Apr 16 8:07pm

In reply to @colleenyoung "@marciandpaul, I really appreciate your sharing your story. It gives hope to others, especially those who..." + (show)

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

Colleen Young, Connect Director | @colleenyoung | Apr 16 5:36pm

In reply to @marciandpaul "Hello. My husband was diagnosed in 2021. He was 52 at the time of diagnosis. He..." + (show)

@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.

Jump to this post

@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?

northoftheborder | @northoftheborder | Apr 16 1:15pm

In reply to @wellness100 "Dr. Scholz put it this way. Chemo represents another path to deal with the cancer cells,..." + (show)

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.