1. < Prostate Cancer

Living with metastic prostate cancer: Any positive stories to share?

Posted by olsente @olsente, Feb 17, 2023

Diagnosed with metastic prostrate cancer Nov17,2022, the cancer had already spread to my pelvic bone, lymph nodes , thoracic spine and throughout my bones fracturing 11 ribs, and to top it off 3 tumors in my head 1 of them behind my right eye causing vision problems. I started chemo Nov 28 ish , I’m on casodex and get the Lupron injection! My symptoms were back pain and I had seen multiple doctors through middle summer/fall! These doctors had me on physical therapy , accupuncture, 2 specialist stated I needed surgery on my back, they filled me with pain meds..not one doctor did series of blood test! Only test was an X-ray! My wife took me to mercy hospital Nov 11 in Buffalo because I was in so much pain and could barely walk. Within 4 hours in the ER the doctor told us they were quite sure I had cancer and would need to admit me run a lot of tests along with getting me healthy enough to go home.Sure shit I was admitted for 13 days,, then the day after my first chemo I ended up back in the hospital for 7 more days, I have had so many blood transfusion due to my counts being so low, a Foley catheter was put in me as well because I couldn’t urinate! I still have my catheter in and am doing my chemo! Does anyone have anything positive they can share with similarity!!! I am having my wife write this due to my vision

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

heavyphil | @heavyphil | 1 day ago
In reply to @vircet "Per my biopsy last Feb 14, my Gleason score was 7. Per my urologist, I am..." + (show)
@vircet

Per my biopsy last Feb 14, my Gleason score was 7. Per my urologist, I am for staging. I was not able to ask for clarification, but I think this meant it is not yet know whether I am stage 3 or stage 4. My nuclear medicine bone scan was done yesterday, CT scan of my pelvis and abdomen will be next Friday, Feb 28. From reading my chart, I understand that after my NM bone scan and CT scan results are in, my urologist is referring me to an oncologist who will recommend what treatment regime I will have. I hope that starting March, things will move fast; I am concerned about my rising PSA that made my primary care provider refer me to the urologist.

Jump to this post

Can only imagine your anxiety…it’s a bummer for sure. But a good medical oncologist can be a real wizard with the meds they have at their disposal these days.
Many men on this forum have found themselves in your shoes and they are still here years later. Best
Phil

REPLY
1 reply
lorenze76 | @lorenze76 | 1 day ago
In reply to @jksenakjr "Keep the faith. I have been living with an aggressive prostate cancer, stage 3 since biopsies..." + (show)
@jksenakjr

Keep the faith. I have been living with an aggressive prostate cancer, stage 3 since biopsies in December 2013. Prostate removed Feb 2014, Cancer was back the summer of 2014. Fall of 2014 started ADT prior to 8 weeks, five days a week of radiation. Feb 2015 PSA every 3 months, watching the return. PSMA PET scan lit up in prostate bed and maybe in a couple lymph nodes. Started on Orgovyx in May 2022 and have been taken daily since then. Leading a good life, minimal side effects, PSA checked every three months. Multiple heart issues seems to be resolved. Enjoying every day, grandchildren. Participated in Reel Recovery program, great experience. Cannot rid myself of the cancer yet, but have it in control. Grateful to be active and see each new day. Has not been easy, but have a positive attitude all the way. 75 birthday coming in July.

Jump to this post

What a blessing. My dad was diagnosed last April with advanced mestatic prostate cancer. At first they gave him a year and a half because of the spread and aggressiveness but we are trusting and believing differently.

REPLY
vircet | @vircet | 1 day ago
In reply to @heavyphil "Can only imagine your anxiety…it’s a bummer for sure. But a good medical oncologist can be..." + (show)
@heavyphil

Can only imagine your anxiety…it’s a bummer for sure. But a good medical oncologist can be a real wizard with the meds they have at their disposal these days.
Many men on this forum have found themselves in your shoes and they are still here years later. Best
Phil

Jump to this post

Thanks for this encouragement, Phil. My family and I needs it to ease our anxiety. I already got the result of my Feb20 Nuclear Medicine bone scan + SPECT: "No scintigraphic evidence of osseous metastatic disease." My CT scan - pelvis and abdomen is on Feb28, I am hoping for a favorable result, that my cancer is only in the prostate, that my urologist indicated is "unfavorable intermediate." The oncologist will see me on March 6, I am very interested what she will to say. My urologist suggests prostatectomy if the bone scan and CT scan are both negative.

REPLY
1 reply
Greg | @hero | 1 day ago

Stay or get close to your care team. I have a lot of respect for my oncologist, radiologist and physical therapist and they are easy to talk to. That has been a positive experience for me..

Hang in there.
66 yo - stage IV metastatic prostate cancer

BTW: I didn't know and had no signs of cancer. I got checked out after my younger brother shared that he had been diagnosed with stage IV metastatic prostate cancer.

REPLY
heavyphil | @heavyphil | 23 hours ago
In reply to @vircet "Thanks for this encouragement, Phil. My family and I needs it to ease our anxiety. I..." + (show)
@vircet

Thanks for this encouragement, Phil. My family and I needs it to ease our anxiety. I already got the result of my Feb20 Nuclear Medicine bone scan + SPECT: "No scintigraphic evidence of osseous metastatic disease." My CT scan - pelvis and abdomen is on Feb28, I am hoping for a favorable result, that my cancer is only in the prostate, that my urologist indicated is "unfavorable intermediate." The oncologist will see me on March 6, I am very interested what she will to say. My urologist suggests prostatectomy if the bone scan and CT scan are both negative.

Jump to this post

Ok , that’s great news! Look, I was Gleason 7 unfavorable but no spread. Had surgery 6 yrs ago and just finished salvage radiation. Doing great.
Your initial post made it sound like you were Stage 3 or 4 which is very serious indeed - but you are NOT, so relax.
Get ready for the bewilderment of choosing either radiation - in it’s different forms - or surgery. Their long term outcomes are IDENTICAL.
Get as much info as you can from different RO’s and surgeons - every Dr has a favorite treatment they like to push; DO NOT RUSH into anything without knowing WHY a treatment is being proposed.
Most importantly, don’t agree to a treatment because you like the Dr or want him to like you…. This is all about YOU, now.
Feel free to pick the brains of the very, very experienced members of this forum, OK? Our accumulated knowledge, experience, grief and pain are better than any AI app you can find! Best
Phil

REPLY
1 reply
vircet | @vircet | 22 hours ago
In reply to @heavyphil "Ok , that’s great news! Look, I was Gleason 7 unfavorable but no spread. Had surgery..." + (show)
@heavyphil

Ok , that’s great news! Look, I was Gleason 7 unfavorable but no spread. Had surgery 6 yrs ago and just finished salvage radiation. Doing great.
Your initial post made it sound like you were Stage 3 or 4 which is very serious indeed - but you are NOT, so relax.
Get ready for the bewilderment of choosing either radiation - in it’s different forms - or surgery. Their long term outcomes are IDENTICAL.
Get as much info as you can from different RO’s and surgeons - every Dr has a favorite treatment they like to push; DO NOT RUSH into anything without knowing WHY a treatment is being proposed.
Most importantly, don’t agree to a treatment because you like the Dr or want him to like you…. This is all about YOU, now.
Feel free to pick the brains of the very, very experienced members of this forum, OK? Our accumulated knowledge, experience, grief and pain are better than any AI app you can find! Best
Phil

Jump to this post

Thanks a lot, Phil. I will keep your advise top of my mind.

REPLY
1 reply
heavyphil | @heavyphil | 20 hours ago
In reply to @vircet "Thanks a lot, Phil. I will keep your advise top of my mind." + (show)
@vircet

Thanks a lot, Phil. I will keep your advise top of my mind.

Jump to this post

And remember, your urologist recommends surgery because that’s WHAT UROLOGISTS DO for a living!!

REPLY
View MoreView Less
Please sign in or register to post a reply.