I guess I’m looking for some guidance from you all because I feel blind-sided and confused. Last month, my father was notified that his annual blood work revealed his PSA was elevated at 34. He saw urology less than a week later, who noted that the right side of his prostate felt firm and suspected prostate cancer. Initially, he had a bone scan which revealed probable spread to the sacrum. This prompted his insurance to authorize the PSMA PET scan (that his urologist initially wanted) and this showed lymph nodes and lung nodules in the chest as well as bony abnormalities in his pelvis - suggestive of metastatic disease to the skeleton and thorax. I guess I’m looking for hopeful stories as far as prognosis and what to expect for treatment. He will be doing all recommended treatments and has follow up with oncology at a comprehensive cancer center next week.
Thank you all so much
Written by
Luka1212
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Luka, here are some notes I put together. They are a repost of my original two-part cancer journey diary. Some "starting the journey readers" might find it helpful. Originally posted as two Health Unlocked "replies" - maybe I should make them actual full "posts". (My original motivation in writing these notes was that it took an unnecessarily long time to learn all these things.)
So anyway I am pleased to report that other than fatigue, I feel sort of normal right now. Even back at work part time. Very different from the pain and terror at the beginning.
My biggest challenge right now is pushing myself to exercise. And of course in the back of my mind is the dread of progression. But the contrast between 3 years ago in spring 2022 and now is astonishing. In frankness we, in other words my wife and I, did not expect that this would be the case.
One side comment is that, because I was diagnosed too late with high volume metastatic Stage 4 PCa, it was too late for surgery or radiation! The success today is entirely related to triplet therapy - in other words drugs and chemo. And my quality of life has not been impaired by destructive therapies, although the achievement of basically zero testosterone means fatigue. (At the beginning I had a lot of meetings with palliative care. Eventually they and I realized it was not so useful. At least at that time and so far.)
With Heaven's permission I will be able to continue to enjoy this level of good health, especially for the benefit of and joy with my family. And thank you to Canadian Healthcare.
(These posts are replies - you might need to scroll up or down to find the beginnings.)
The Beginning Of A Metastatic Prostate Cancer Journey - Part 1 of 2
By the way, one topic not covered in the notes is the fact that our PCa hormone therapies, the ADTs and the ARPIs etc., which keep us alive by pushing testosterone to zero, also push the little bit of estrogen that a man needs to zero too. (Estrogen is made from testosterone in our bodies!) Many of our testosterone suppressing therapy side-effects, such as hot flashes, are in fact attribuable to estrogen suppression. Whether or not it is worth doing anything about this either directly or indirectly is a whole 'nuther topic.
three years ago I was bed ridden with pain I never dreamt possible. Psa 5664 and mets in lungs, nodes, left femur, pelvis and ribs. Started with casodex and lupron. Immediate pain relief but took months to regain my strength and muscle mass from being inactive for so long. Added adiraterone after about 16 months with 5mg prednisone. Just dropped the prednisone a few weeks ago and added dexamethasone. No chemo or radiation yet. I shoot archery daily for upper body conditioning, and because I love il.lol. I hunt, fish and do all the maintainence around the home. I never asked God to cure me, only to allow me to be an asset to the family instead of a burden and wow has HE EVER NAILED IT! I don’t treat every little rise in psa, I concentrate on quality of life. I have one doctor who wanted me to start chemo as soon as my psa bumped up but I still have a prostate so things are a little different for me. A specialist at JHUH said next step is a steroid switch to dexamethasone. If the cancer is spread as you have mentioned the goal should be qol as cure isn’t likely. Pray, for guidance to make the decisions that will provide qol and then have the courage to act on those decisions. God bless
First of all how old is your dear Dad? Next please update his bio.... it will help him/you and help us too. (All info is voluntary). Finally you've come to right place for help and information and remember it's always darkest before the dawn. Thank you and keep posting!!!
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Father in Law - PSA 467
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