Hey guys, it’s been a long time since I’ve posted. To give you some background, my dad was diagnosed with stage IVb prostate cancer/Gleason 9 in October 2018. Prostatectomy not an option for local and peritoneal Mets at that time. Underwent 6 rounds of taxotere, responded SO well with minimal side effects. Since then, PSA has been undetectable. He is currently doing Eligard I think every 6 months? And daily Zytiga with good response. He recently started Zometa I believe in November 2019. Things have gone to shit since then. In Jan 2020, he was hospitalized for left flank pain and being unable to pee. It was found that he had hydronephrosis of the left kidney so they attempted a left ureteral stent. That was unsuccessful and he ended up with a nephrostomy. He then underwent a TURP in hopes of him being able to pee. Subsequently, his nephrostomy was closed and a stent was put in the left ureter. Since then, his kidney function has not improved so they put a stent in the right ureter as well. Basically, now he has bilateral stents, still can’t pee spontaneously and is back in the hospital with creatinine level increasing by the day. He is having a lot of sciatic pain, which I’m assuming is probably bone Mets. His biopsy from the TURP also showed that his cancer is not only the adenocarcinoma he was originally treated for but is now differentiated into small cell carcinoma. His MO says if he will undergo bilateral nephrostomy, his kidney function will improve enough for more IV chemo to treat the small cell. All in all, this may buy him a few months. Has anyone else been down this road? Is it worth it? He’s only 68 and pretty healthy. I’m pushing for him to go for it but that’s just me being selfish. Should we just focus on hospice and pain control? Please help!!
Needing Advice: Hey guys, it’s been a... - Advanced Prostate...
Needing Advice
God help you all🙏🙏
Here are some options for small cell prostate cancer:
pcnrv.blogspot.com/2016/12/...
I think you're asking a good question about treatment vs hospice. That's entirely up to him. Some men want even a couple of months of good quality life if they can get it. Others would rather just be kept as pain-free as possible.
Thank you for the info on small cell, it’s a sneaky little bastard.
He doesn’t have any choice. Get the bilateral . I had them for over a years.. For me Rt and double adt shrank pc tumors blocking kidneys and urethra . I had stents at the end to ween me off of the tubes . It worked for me . But I was 53 and strong besides the dammed APC eating me up . Unless he is ready to leave . He should hope that they can get him through it and to a much better place. It was the worst year and a half of my life . It s demeaning living with all of the tubes and bags. But then we see a blind or quad person and problems don’t look as bad . If he is pretty strong man he can make it . It is drudgery and some misery . It is really up to him to suffer or give into hospice and just control the pain . I’m sorry that you are seeing your father go through this . He is blessed to have you . Please let us know how he’s doing . Take care 🙏Scott
Thank you Scott. He agreed to do the nephrostomies. Unfortunately he hard a time coming out of surgery. Ended up in ICU on a vent. They got him stable enough yesterday to come off of it and he’s ok for now. Hoping he can push through so he can decide if he wants to continue treatment or not. I f-ing hate this cancer.
I’m sorry to hear of the complication of the vent. Good that he’s off of that . Besides a broken elbow as a teen I had not been a customer of the hospital staff ever..I was in icu one week. That was enough for me. Get him out of there ASAP . Home is where he should be . Itsa difficult path with the tubes. Misery ..He must see the goal of shedding all tubes . I was pretty weakened also.. I’m praying that the plan works and he can return to some assemblage of normalcy .. 🙏🏼🙏🏼🙏🏼🙏🏼My wife’s heart goes to you in this troubled time. May god heal him from this scourge of urology . 😖 Scott✌️
When my dad was diagnosed back in June 2015, his tumor on his prostate was so large that it had caused his kidneys to go into failure. He underwent the procedure to have double nephrostomy tubes in place and began chemo immediately. Within two months he was able to have the nephrostomy tubes removed and has never looked back. He has remained on hormone therapy and is starting provenge this week. The nephrostomy tube saved his life and allowed him to be able to begin chemotherapy. Without them he never would have been able to tolerate the chemo and would likely have had to go on hospice. He was in his early seventies at the time. My dad's condition was different in that he was hormone therapy naive and had been previously untreated. So for him it was a matter of beginning hormone therapy along with the chemotherapy. Nevertheless if it were my dad I would insist on him giving the nephrostomy tubes a shot. In all reality they will probably bring him relief from the kidney pain. In and of themselves they are a nuisance but they were much better for my dad than the kidney pain he was feeling beforehand.
Thank you so much for responding. That sounds encouraging and I hope my Dad will give chemo another shot! He’s too young and healthy to give up the fight.
You're welcome! For my dad, the nephrostomy tubes not only saved his life but also gave him a lot of relief from pain. Hopefully your dad experiences the same. And yes, the decision to start chemo has to be a very difficult one. My dad had a very hard time with chemo. I can't imagine how he would respond if he were told that he needed to undergo more. I think it would take a whole lot of mental preparation and commitment for him to agree to go through chemo again. For my dad, he still has a lot of options ahead of him. He has not tried zytiga or xtandi yet. He has only had first line hormone Therapies. My Hope and prayer is that he can get a lot of time out of the second line hormone therapies when the time comes for him to start them. And, when they have run their course more medicines will be available that will hopefully not put chemotherapy in his line of sight for a very long time! The difference between your dad mine is the age. My dad is headed toward 80 years old. His dad live to be a hundred. He definitely has longevity in his genes , so I'm hoping that with the right medicines he can live to be a old man like his dad did!
Your pops is amazing!🏋🏻
Two months of hell. But tubes out! Fantastic ! The tubes saved me also. My dr told me that they didn’t do this just 50 yrs ago . I’m glad that your father got through the tubes..👏🏼👏🏼🙏🏼
What does your father want to do?
Unfortunately that’s the problem...he and my mom have never talked about it. I think they naively believed they didn’t need to. Now that he’s has the surgery, i am strongly encouraging them to make these decisions. We ended up in an emergency situation after the surgery where he needed to be placed on life support. Obviously he couldn’t make that decision and my mom looked to me for help. Of course I said hell yes, he didn’t go through that surgery for nothing! But I know if we’re ever in that situation again, we need to know his expressed wishes.
I've had stents in my urinary tract for release of pee in my kidneys.. Can they use stents instead. Sorry, I'm definitely not in the medical field as you can tell by this post. I'm just so very very sorry your Dad has to endure "all this crap" at the age of 68. God help you all....
j-o-h-n Thursday 02/20/2020 6:19 PM EST
Thank you! Yeah it’s all crap and this type of mixed cancer he has is just a sneaky little f-er. Hoping he’s up for continuing to “slay the dragon” as he calls it. He did go through with the nephrostomies. He just had bilateral stenting last month but they are already blocked by the tumor. Had some complications after the surgery but he’s ok for now. Thank you for responding, I always enjoy seeing your posts. It’s refreshing to see a little humor in the midst of all this pain.
Stay loving the man . He needs this so .. If you’re from 1980 then this is a life wake up for you towards our fragility on this planet .. The 80’ s were my time to shine . I was at my pinnacle of thinking I was king of the 80’s or so I thought .? I salute the child of the 80’s . I have an estranged daughter born in 80 also . She abandoned me like the rest of my family except for one . This is a great personal pain . I’d love to have the support of a loving daughter .. ? I do have much love at home. This love is my reason for withstanding what I must . You can very well be your fathers reason to persist . I pray for miracles for your father . He did well in having you .😂🕊🙏🏼
I’m so sorry you don’t have a healthy relationship with your daughter. I’m the only child. It’s always been just the three of us so I can’t imagine life without my dad! I truly hope me and my three sons can be one of the reasons he gets through this!
Thanks, I was never with her and I didn’t raise her . I am sure that you are his reason to love . Three sons must be a proud moment for grandpa. Hold those boys and dad tight . They all need you . Take care . Scott
How is your dad doing now? What was his PSA when they found the small cell in the TURP biopsy?
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