u/skatinmatt93

My dad was diagnosed with Stage IV metastatic prostate cancer that had already spread to his bones, lymph nodes, and a small spot in his lung when it was discovered. He is 63, Gleason 4+4=8, and started ADT recently. He had his first docetaxel chemotherapy treatment five days ago.
His MRI was PI-RADS 5. His PSA was around 140 when the cancer was first discovered, rose to 169 before treatment, and is now down to 18 after starting ADT.

The first couple of days weren’t so bad for him but Today, day 5 after his first chemo, has been the hardest day so far. He is extremely sore all over and says his pain is 10/10. It hurts him to lie down, he could barely sleep, and he was crying from pain this morning. He is not nauseous, but the full-body pain and fatigue have hit him much harder than we expected.
He also had two episodes this morning where he urinated on himself without realizing it was happening. It has not happened again since then, but because he has bone metastases and the pain is so severe, we are contacting his oncology team/after-hours line to make sure he is evaluated and to rule out anything urgent.

His boss had asked him to go on a moving trip out of state for work, and I’m relieved I told him it was not a good idea. After today, he said himself that he would not have made it there okay. I think this is making it clear that continuing physically demanding work during chemo may not be realistic.
I know nobody here can give medical advice, and we are reaching out to his doctors. I’m mainly looking for real-life experiences from people who have gone through docetaxel with metastatic prostate cancer:
• Did you or your loved one have severe all-over muscle, joint, or bone pain around days 4–6 after chemo? How long did it last, and what actually helped?
• Did anyone experience urinary accidents, urinary retention, or other bladder changes during treatment? What did the oncology team find or recommend?
• What should I ask his oncology team about getting his pain controlled before the next cycle?
• For anyone with a physically demanding job, when did you realize work or travel was no longer safe during treatment?
I hate seeing him suffer like this. I’m trying to help him plan for what is realistic, keep him safe, and make sure he has as much support and quality of life as possible. Thank you to anyone willing to share what helped you or your family.

My dad (63) was diagnosed a few months ago with high‑risk prostate cancer, and we now know it’s Stage IV metastatic. His PSMA PET showed spread to bone, lymph nodes, and a small lung spot. Gleason is 4+4=8 with cribriform and perineural invasion. His PSA was around 140 at diagnosis and 169 right before starting treatment.
He just had his first oncology visit and started ADT last week. Chemo is scheduled to start next month. I’m his son, trying to be there for him and also sort out the practical life stuff so he isn’t fighting this alone or stressed about money and housing on top of everything.
Right now we live about an hour apart. My goal is to get him onto SSDI, into subsidized senior/disability housing closer to me, and eventually apply to be his paid caregiver through New York’s CDPAP program. If I can move him closer, it’s better for everyone — my daughter (3) can see her grandpa more, and I can be there for appointments, bad days, and just ordinary time together. I want him to have the best life we can make for him, not just a long list of treatments.
He’s still working full‑time now, but once chemo starts I don’t think that’s going to be realistic. I know that’s going to be very hard for him to accept emotionally — he’s been a hard worker his whole life, and he’s coming up on 19 years sober at the end of this month. I’m proud of him for that and I don’t want this to feel like everything is being taken away at once (health, work, independence).
I’ve already started:
– Helping him file SSDI (Compassionate Allowance for Stage IV)
– Getting him on senior housing waitlists closer to my area
– Reading up on how CDPAP caregiving works in NY so I can eventually be his caregiver in a way that’s sustainable for my own family too
What I’m hoping to learn from people who’ve been through this:

1. Chemo expectations: For those who did ADT + chemo for metastatic disease, what did chemo actually look like week‑to‑week? How sick were you? Were you able to drive, cook, or do light work at all, or did you basically have to stop working?
2. Work and identity: If you had to stop or greatly cut back work, how did you handle that mentally? Anything you or your family said or did that helped with the anger/grief around not being able to “just push through” anymore?
3. Caregiving + housing: Has anyone here gone through the process of getting a parent on SSDI/Medicaid, moving them into subsidized housing closer to you, and then becoming a paid caregiver? What worked, what didn’t, and what would you do differently?
4. Making memories while treatment is happening: Looking back, what do you wish your family had done more of during treatment? Specific outings, routines, conversations, or small things that mattered more than you realized at the time?
5. Things you wish you’d known at the start of chemo: Any practical tips for food, nausea, fatigue, staying strong, or protecting mental health that you don’t usually hear in the clinic?
   I hate that he’s going through this, but I’m determined to show up for him and give him as much quality of life and love as we can, not just medical appointments. If you’re willing to share what helped you or your family in a similar situation — especially around chemo, work, and caregiving — I’d really appreciate it.
   Thank you to everyone here who takes the time to answer; reading your stories has already helped me feel less alone in this

Yesterday was my mom’s birthday who passed back in 2020. Wasn’t really planning on doing much, I had plans on just cleaning up my backyard then found out my fiance got my brothers over to celebrate in honor of my mom’s birthday. She even made us a cake and sang happy birthday to her. I think it means more to me than she realizes. She knows I’m going through a lot just finding out my dad has stage 4 prostate cancer. And I rarely see both my brothers at the same time together. It was just a really sweet gesture of her and made me really grateful for her

few weeks ago I posted asking for advice about my dad (63) after his biopsy came back showing high-risk disease. Wanted to come back with an update for anyone following along, and to ask a few more questions now that we have the staging.
Quick recap from original post:
• PSA 140 (briefly 115 on antibiotics)
• MRI: PI-RADS 5 bilateral
• Biopsy: 11 of 12 cores positive, 40-85% involvement
• Gleason 4+4 = 8, Grade Group 4
• Cribriform + perineural invasion
PSMA PET (Ga-68 DOTATATE — more on that below) results yesterday:
• Stage IVB, M1c
• Bone mets: Left sacrum (largest, SUV 26-29), right iliac wing, left ischial tuberosity
• Lymph nodes: Extensive — supraclavicular (SUV 26.4) all the way down to bilateral pelvic (SUV 19.5)
• Lung: 6mm nodule in right lung base, SUV 13.9 — the M1c-defining lesion
• Confirmed Stage IVB high-volume metastatic disease
Where we are now:
• Urologist confirmed surgery is off the table given mets
• Referred to medical oncology — first appointment locked in for early July
• Plan to discuss triplet therapy (ADT + abiraterone or darolutamide + docetaxel)
• Working through SSDI Compassionate Allowance, Medicaid, and housing assistance applications this week — he’s a smoker, recovering alcoholic, low-income, rents, drives a Tacoma he’s still paying off, has a multi-day work trip out of state next week that he refuses to cancel
Questions for the group:

1. For those who had triplet therapy started for similar high-volume disease — how fast did your numbers respond? Looking for realistic expectations for PSA drop and symptom improvement in the first 4-8 weeks.
2. DOTATATE vs Pylarify question — His PSMA scan was Ga-68 DOTATATE, not the standard Pylarify (PSMA-targeted). DOTATATE targets somatostatin receptors and is more typical for neuroendocrine tumors. Has anyone else had this scan type used for prostate cancer staging? Should we be flagging neuroendocrine differentiation concerns with oncology at the first visit?
3. Bone met pain management — Big sacrum lesion (SUV 26+) and he’s already on chronic hydrocodone for back issues. For those who had sacral mets, what helped? Xgeva/Zometa from day one? Radiation to specific lesions? Pain clinic referral?
4. For caregivers/family who’ve been through the first 6-12 months of triplet therapy — what was the realistic timeline for him being able to work? He does physical labor (moving furniture). Trying to figure out the window before chemo really hits.
5. BRCA2 testing — how soon did your oncologist order it? I want to push for this at the first visit, not have it slow-walked. Anyone have experience with PARP inhibitor eligibility for BRCA2+ patients?
6. For the men on this sub who got the diagnosis themselves — my dad just found out hours ago that this is Stage IV. He’s processing by going to work tomorrow like nothing happened. How did your families handle that first week? When does it sink in? What did/didn’t help?
   Thank you to everyone who responded to the original post. The advice on pushing for genetic testing, getting a med onc referral fast, and asking about triplet therapy specifically (not just “hormone therapy”) is exactly why I knew what to ask when the results came back.
   He’s tough. He’s stubborn. We’re going to fight this.
   ---

My dad was just diagnosed and we’re waiting on a PSMA PET scan for staging. Trying to learn from people who’ve been through this. Here are his numbers:
Diagnosis details:
• Age 63
• PSA: 140 ng/mL (was briefly 111 on antibiotics)
• MRI: PI-RADS 5, bilateral lesion
• Biopsy: 11 of 12 cores positive, 40-85% core involvement
• Gleason: 4+4 = 8, Grade Group 4
• Cribriforming present
• Perineural invasion present
• Slides reviewed at MSK Nassau
Status: Diagnosis confirmed. Waiting on PSMA PET to determine staging. Just got handed off from urology to oncology — first oncology appointment being scheduled

Questions I’d love input on:

1. For those with similar numbers, what stage did your PSMA PET show? Trying to mentally prepare.
2. What treatment approach was recommended for similar profiles (ADT + second-gen drug + radiation? Triplet therapy with chemo?)
3. For caregivers/family — what do you wish you’d known or asked at the treatment planning appointment?

My dad was just diagnosed and we’re waiting on a PSMA PET scan for staging. Trying to learn from people who’ve been through this. Here are his numbers:
Diagnosis details:
• Age 63
• PSA: 140 ng/mL (was briefly 111 on antibiotics)
• MRI: PI-RADS 5, bilateral lesion
• Biopsy: 11 of 12 cores positive, 40-85% core involvement
• Gleason: 4+4 = 8, Grade Group 4
• Cribriforming present
• Perineural invasion present
• Slides reviewed at MSK Nassau
Status: Diagnosis confirmed. Waiting on PSMA PET to determine staging. Just got handed off from urology to oncology — first oncology appointment being scheduled

Questions I’d love input on:

1. For those with similar numbers, what stage did your PSMA PET show? Trying to mentally prepare.
2. What treatment approach was recommended for similar profiles (ADT + second-gen drug + radiation? Triplet therapy with chemo?)
3. For caregivers/family — what do you wish you’d known or asked at the treatment planning appointment?