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Prognosis for Stage 4 Metastatic Prostate Cancer
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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Do you do scans regularly? And what do they mean by undetectable these days, at Johns or anywhere? At what level do they stop medication atJohns? Just curious.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
They rely on the PSA to determine when to Image with PSMA PET. They told me they would wait until my PSA rose to 0.2 before they considered doing another PET From 0.2-0.5 PSA the PET is about 50-60% sensitive. Imaging below 0.2 likely won't show where the cancer is. There is a rare type of prostate cancer, neuroendocrine, that does not elevate the PSA so they do a bone scan and CT every year in the unlikely event that type of cancer is present.
Johns Hopkins (my MO) uses < 0.1 as undetectable. That is what Labcorp tests. They don't use the ultra sensitive PSA test. It is not as reliable at very small number and can fluctuate. Also, if you aren't going to Image or treat until it gets to 0.1, why do the test? I did get an ultra sensitive PSA performed at Emory (where I got my Radiation-they are close to where I live). It came back < 0.014 which is their undetectable number. It varies some by lab and institution.
My MO at JH is very experienced and is the Director of the Brady Urologic Cancer Research Center. He has written (or co-authored) around 500 articles) mostly on prostate cancer. With the rapidly changing treatment options, he believes in individualizing therapy. He believes in balancing quality of life. He has specific reasons for what he does and doesn't do. He doesn't follow a Standard of Care or protocol in the literature as it is changing so rapidly with new advances. Each person's case is different. Different age, Gleason score, stage of cancer, co morbidities, response to treatment etc. He did present me with the options of treatment. I asked "What do you recommend?". He told me and that is what I did.
Just to add something. When I discovered my PSA had rapidly doubled in 4 months a year and a half ago, despite successful SBRT, I know I had new systemic disease and needed additional treatment. I did research and contacted Diane Reyes, NP for Ken Pienta, MO. They immediately scheduled a ZOOM consult and I sent them my pertinent information. Dr. Pienta gave me recommendations of several Caner Centers/individuals for treatment. I asked about him and MS Reyes. He said they would be glad to help me if that was my choice. A humble but confident physician. BTW, they said there was no charge for the consult as it was out of state ZOOM and they couldn't charge, yet they spent almost an hour with me. Circumstances may have changed. I immediately liked both of them and felt confident in their care.
My story.
Googly Radium 233 and lu 177
I almost fell off my chair when the Dr. said stage 4 aggressive. My psa was at 932, I thought I missed a decimal point somewhere. We read it's not curable but my Dr said they can "control" it. All I can ask. I read on here one person at almost 10 years, another at 20 years with stage 4 prostate cancer. That is awesome news and very encouraging. That awful pain you mentioned, mine went away after starting treatment and has not come back. Dr says I'm finished chemo, for now. I understand I will have to keep changing treatment at some point but you hear all the time of new or different treatments. I try to keep smiling even when the day isn't so good. I wish all the best to all who are on this journey.
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6 ReactionsMy husband has been at Stage 4 since 2011, so for 13 years now. We have met many other men who have been at Stage 4 long enough that they consider their metastatic prostate cancer a chronic disease which cannot be cured but can be controlled. If you are under the treatment and monitoring of experienced providers at a highly rated cancer center, this is possible for you too, Phil. (Hooray for your daughter--you are lucky she is involved.)
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10 ReactionsIf only in bones look at Radium 223 or Xofigio Its working for me after Xtandi failed
On Xgeva and Zolodex too
https://crukcancerintelligence.shinyapps.io/CancerStatsDataHub/
I’ve had stage 4 PCA for>20 yrs. with bony Mets for 10 years. No visceral Mets. From several hormones threrapies, chemo. , radiation to radium 223 and now Pluvicto. Also had PROVENGE 6 years ago and xgeva also.
So I’ve had every treatment modality ( they may still recommend more chemo other than docetaxel).
I plan to be around for awhile but no one can prognosticate as everybody is different. My PSA is still >100 but has come down from 400 on Pluvicto.
You have multiple options at this point but be confident that many men are alive after 20 years of stage 4 disease. Hopefully you can get relief of your pain with further treatment or pain medications.
You’re not alone with this disease.
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13 ReactionsI am 4 years with mets to bone Xtandi failed Now 3rd shot of Radium 223 Xgeva and Zolodex as well 2017 had radiation take prostate out 2020 radiated L2 1 inch out
How old are you now? I am near 80
Why not docetaxel for chemo
They tell me that's next if Xofigio fails
Advise please
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