my mom called my 7/30/22 alerting me that my father wasn’t looking good, at all. I had seen him in March earlier that year and he was having hip and back pain, but otherwise, looked normal, if not a little tired. But some time late June/early July he lost a lot of weight, started walking weird, experiencing extreme pain, and grown extremely pale but would refuse my mothers attempts to get him seen by a doc. So she called me in and I flew home a couple of days later to a GHOST who used to be my dad. I got him to agree to go to a chiropractor on 8/5/22 and there was a lot of trickeration and conspiring involved between myself and the chiropractor, but we eventually got my dad to a PCP because the Chiro sent his labs to a radiologist who said he could clearly see a mass in his lungs and blastic Mets in the spine. On 8/20/22, he lost control of his bladder, bowels, and function of his lower legs. He agreed to go to the ER where a CT showed the prostate was full of cancer, had begun invading the bladder, was extensive throughout his pelvis, spine, ribs, and lungs, as well as lymph nodes. They gave him pain meds and sent him home. His appointment with the oncologist was 8/23/22, but 15 minutes into the appointment, the oncologist called 911 to take him to the hospital due to potential spinal cord compression. My father was admitted and had nephrostomy tubes inserted (kidneys were tanking quickly) as well as a laminectomy. In the hospital, his PSA was found to be 910 and a bone scan suggests it’s even in his skull. They put him on ketoconazole and within 3 days his PSA was down to 568, but quickly rebounded up to 780. He got a Lupron injection 2 days ago and is in inpatient rehab relearning how to walk and complete ADLs. On 9/20 we are to meet with his oncologist again for the “initial appointment” where they will redraw labs and set a plan but as of now it’s xvega and potentially zoladex?
I imagine the first appointment is going to be pretty grim. Is there hope for my dad? Is it concerning that his PSA rebounded so quickly with the keto? He is also presenting with low sodium levels, I read this is a poor prognostic factor for cancer patients. What would have been helpful for you during your first appointment with the oncologist? I want to be as supportive for my dad as I possibly can. I plan to take a leave from work and move back here and help with his care and I feel so overwhelmed with fear. This will be really the first cancer in our family so I’m open to insight tools and suggestions!
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Shelboop
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Sorry to hear that your Dad's cancer got so far advanced . However, what you are describing above is not very unusual. Bone mets so extensive that it led to spinal cord compression. Thank God Chiropractor did not do manipulation otherwise we would be talking about broken vertebral column. A major concern is that "mass in his lung" Need further exploration.PSA can fluctuate wildly very early on but if it starts to steadily decline...then that is good news. Bone mets can shrink with treatment...even if they are extensive .
The tumors in prostate gland might be compressing his ureters causing back flow of urine upwards and that causes dilatation of ureters leading to hydronephrosis which can destroy some kidney tissue. But again, treatment can mitigate this backflow and release pressure on ureters and kidneys. Treatment does shrink prostate tumors and that reverses the above process .
It is truly advanced and complex situation. But keep the hope intact as miracles happen in medical field all the time. Once PSA keeps dropping , mets can melt away and symptoms can subside. Best wishes for you and your Dad.
I'd still advise chemo though. Many men here have had chemo with great success- I read often that people are afraid if chemo but his best bet is definitely the triple treatment Tall_Allen mentioned above. He needs to hit the cancer from all angles as early as possible- that's what I've seen on this site and others is most successful fir quality and quantity of life💙💙
Welcome to where you don't choose to be. Many knowledgeable folks here Shelboop. Soon they will respond. It is vacation time so if you don't get many responses write again. I think there's hope for your dad. I'm glad you're going to help your mom. Two caregivers is better than one. Caregiving for one is not easy. Always take time for yourselves too. It sounds like your mom definitely needed you to get him to go. Blessings on all of you💞🌻Jackie
I’m sorry your father and family areDealing with this. I’ll never understand the resistance to go see a doctor that is characteristic of so many men.
A couple pieces of advice:
1) this is a marathon not a sprint. Be sure you are taking care of yourself and your mother. You can’t care for someone if you don’t care for yourself first. Fortunately this can be a very long path so pace yourself.
2) talk with a medical oncologist and radiation oncologist; get second opinions until your comfortable with the team and dump any doctors who are not a good fit.
3) assuming they have done a biopsy to get more details on the cancer, ask about genetic testing of the cancer to see it that might open any other lines of therapy.
4) don’t sweat the treatment side effects. The side effects of no treatment are worse.
What is your father’s age and has he prior to this been generally active and in good health?
Thank you for this. I do feel like we’ve already been sprinting everywhere and so that’s a good reminder. And the logic of side effects of no treatment is strong.
My dad is 59, 60 in March. I’m not sure about his health. He never watched his diet or exercised, but initial blood work we got from the PCP in order to get oncology referral was actually really good (shocked us all, even him). The only marker out of place was ALP. Now, 2 weeks later, everything is out of normal limits.
Him being younger will help him tolerate the treatments. Beyond that 1) drink water; 2) try to get exercise- even a very short walk can help and 3) try to eat healthy and these last three apply to everyone.
ADT (such as Lupron shot) plus Abiraterone plus Docetaxel
or
ADT (such as Lupron shot) plus Darolutamide plus Docetaxel
These combinations offer the most aggressive treatment approach and give the best chance for long-term survival.
The Docetaxel chemotherapy oftens scares people, but it is a limited number of cycles usually 6 so it's over in 18 weeks. Plus the side effects are quite tolerable for most. i did it and tolerated it quite well.
When I was diagnosed, my bone scan was so bright my doctor had to use sunglasses when looking at it so he wouldn't hurt his eyes! All kidding aside, it was lit up from top to bottom and PSA over 500. I was in excruciating pain when I started.
I'll be celebrating 7 years soon, I think because of my aggressive treatment approach. So I would recommend that to anyone who is fit enough to take it. Go hard at the cancer in the beginning, it pays dividends down the road.
😢. Don’t give up before the war has started, stage 4 here Aug. 16. Get him to a good oncologist who will get aggressive with the treatments. In my case ( Mets in spine,neck,hips and ribs ) my doctor went straight to chemo. 6 rounds but it stopped any further growing of the Mets. No promises but just good doctor and luck 🙏🙏🙏
Prepare for the worst as best you can, and hope for the best possible outcome. Do a lot of research, ask questions, get second opinions, find a qualified medical team at a major cancer center including a palliative care specialist. There are many resources out there. Seek and yee shall find.
My husband was 49 at diagnosis with multiple metastasis to bones and PSA of over 677. We net with three medical oncologists who soecialized in pristate cancer at research hospitals as soon as we could. It was important to ne to find a medical oncologist team- not just a radiation oncologist ir surgical oncologist- I wanted a medical oncologist to run all treatment options suggested by the other oncologists with us. I'm so happy my husband's oncologist went aggressive from the start and I wish the triple therapy trials were complete back then (2017 was my husband's diagnosis). We did follow the most aggressive treatment plan at the time: chemo asap and ADT then directly to zytiga plus prednisone and kept ADT. that is what my husband is still on and doing well. During chemo we made sure he ate enough protein, drank a lot of water/electrolytes and lifted weights.
It is scary at first- terrifying. You and your mother should keep a journal- I write all things down and add questions I want to ask at appointments. I only allow myself 2 hours each morning to research, come to this site, etc. Otherwise I'd go crazy all day. I also make myself meditate or take 15 min each morning to sit quietly. I had 14, 16, and 18 year old kids at the time that i also needed to concentrate on. My husband went plant vegan initially and no alcohol- I think he felt like he had to feel like he controlled some part of his treatment- but he has since added back seafood and occasional alcohol. We tell his oncology team everything. He also works out- weights and cardio- to keep his bones and weight in check since the treatments can really effect them.
And, like many said above, take care, as caregivers, of yourselves. Be sure all the legal stuff is up to date so that can calm your minds as well- have your mom and you added as power of attorney and power of medical just in case. Doing some of those tasks eased my mind and my husband's.
Just some things that have helped me along the way. This site is THE best for frank advise. The guys on here are full of knowledge but also humor and compassion. This is the best forum for advanced prostate cancer I've found in my 5 years of dealing with Pca💙💙
Shelboop, I am 68. Stage 4, but much better place than your Father. It is amazing to me how many Men, when I tell them to be sure and check their PSA (I suggest this to a lot of men) say… “I haven't been to a Dr in 20 years. When its my time, the good lord will take-me”. Ive heard a version of this at least 10 times. Many people just decide to wait until the pain is so bad before they will go to a Dr.. With PCa, if you have symptoms, its usually very late. Support your Father. Give him Love, kindness, patience. He is in a very tough place. Do everything you can to make him comfortable. Some guys here have had quick relief from SABR (stereo tactic Ablation Radiation) to bone mets, with less pain on day#2. Keep that as one idea. First see how/if the ADT (Adno Deprivation Therapy) does on lessening his pain. Make him comfortable. Many Blessings for you, and your family. Mike
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