I was diagnosed with stage 4 PCa 4-years ago today. At the time, I recall being in total shock. Had no idea what a PSA was (mine was 227). And did not know that prostate cancer could spread - thought my back pain was a muscle pull from playing golf.
I read as much as I could about PCa, studied the mortality tables (unnerving...waste of time), has a prostate biopsy (Gleason 8). My head was spinning.
I decided to be as aggressive as possible. Started ADT immediately as well as radiation to my spine. Then early chemo. PSA was undetectable for about 18-months. Then started rising slowly ... about 0.1 per month. Eventually reached 1.8 and then on to Zytiga plus prednisone. PSA back to undetectable. Last summer I had my prostate removed at MD Anderson - they diagnosed me as oligometastatic and decided to give this approach a shot - clean margins and no cancer evident outside the prostate. Very encouraging!
PSA has been undetectable for 17-months now. I’m hoping for an ADT holiday at the end of the year.
As I reflect on this, here are a few thoughts:
1) this is a marathon ... not a sprint. Prepare yourself for this.
2) everyone’s cancer is different ... while the statistics are useful, no one really knows how each of us will respond to treatment
3) you MUST be your own health advocate. Push, push, push your doctors. Get second and third opinions. Study and ask questions. If you don’t do this, no one else will either. I have been amazed how uneducated some doctors are about PCa - don’t assume they know what they are talking about
4) ignore the mortality tables
5) love your family like it’s your last day on earth ... even if it’s not, what’s the harm?
6) keep a positive outlook ... attitude is the one thing we all control!
7) exercise is the key for good physical and mental health ... especially to counter the effects of ADT, chemo, radiation and surgery
Finally, I want to thank the members of this forum - you have educated me, inspired me, consoled me, offered amazing advice, and given me the opportunity to help encourage others.
I hope sharing my story helps others as you continue your journey! 🍀🌈
Have a great day!
James
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JamesAtlanta
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Patrick - thanks to you for the nice note. And especially for the contributions you make to our forum! I look forward to reading your posts as you keep us all updated on the latest studies and information!
Great news indeed! You may remembered that I PM'ed you 5 months ago because our diagnoses were so similar. Since then I've continued to mirror your experience as my PSA is all but undetectable after chemo at 0.02, (stupid extra sensitive tests :-). Next up is Zytiga as soon as the insurance company approves it.
I have a couple more questions about your journey: Were you oligometastatic at diagnosis? Or did you get that way by treatment reducing the number of mets?
Also, did they confirm that there was still cancer in the prostate when it was removed?
I was always oligometastatic, although the doctors never used the term with me until about 2 1/2 years in. My MO at MD Anderson said the term on one of my visits, so I looked it up online to understand the definition. I only had one met (t-8 vertebra) outside the prostate. It was extremely painful and was starting to compress my spine. They radiated it - no visible activity there anymore.
After the chemo and ADT, I still had signs of active cancer in the prostate. But none outside the prostate (this was validated by the lab after my surgery). That’s why they recommended that I have my prostate removed.
So far, so good! Best of luck to you, Tom! Let me know if you have other questions.
Ah, so that's where our diagnoses diverge. I started off with many mets in my ribs, spine, and hips, but strangely almost no cancer in the left side of my prostate (it was all in the right half). Not sure if I'd be considered oligometastatic if all but a few mets disappear. Of course, if they all disappear I won't complain!
That sounds awesome.!!!I started the ‘journey’ with a tumour compressing my spine at T8 which I thought was a pull from lifting. And other Mets subsequently found as per my profile.
By removing the prostate you remove the primary tumour.
However, not wanting to crash the party with it metastasized outside the prostate doesn’t it mean you still are likely to have tiny prostate cancer cells circulating/ landing on bone and growing if you stop ADT and abiraterone and return testosterone to normal levels.
If you did BAT or Lu 177 wouldn’t there be more chance of actually killing any remaining little bastard prostate cells still hanging around?
Good question. You are not crashing my party ... I’m more than aware that the cancer may become active again. I had a whole body PET scan with no sign of active cancer, as well as a circulating tumor cell test with similar results. So I’m ‘clean’ with the most sensitive tests available.
I’m going with the strategy developed by my MO at MD Anderson ... they said they are ‘going for a cure’. I think they believe that ADT and chemo are systemic treatments. But I’ll ask about your suggestions at my next appointment.
So happy to hear that you are going strong ! You were a source of encouragement to me when Jeff got his Stage 4 metastatic diagnosis, and I really appreciated it. Wishing you continued success !
Good stuff James. It really is crazy how much this disease varies from man to man. Having a bone met but no cancer showing outside of prostate is a rare case indeed. I'm with you man....find a doctor willing to go after it and not go with standard of care and hit coast. If we don't try we will never know the outcome. There are so many doctors that don't once disease is found in other areas of the body. Thank God for the heavy hitters such as MD and Mayo that push the boundaries. Great job at pushing to get yourself to this point and may you have a lifetime of undetectables.
Happy 4th and here's to many more. I'm 4 months to the expiration date they gave me. I'll be 2 and a half and hopefully heading for my 4th. You are an inspiration. Congratulations!
Can’t wait til we can celebrate your 4th anniversary - and then many, many more after that!
Best wishes,
James
You have fought hard to get to were you’re at . May you stay with continued success pushing our friend back into its hole. I’m just 3 months ahead in this journey . Peace James 👏
Finding peace is the goal in all of this . We keep rolling with some appreciation of the brevity of life . Everyday away from doctors and treatments is a gift for us stagecoach drivers of #4 .. if we make it to out ten year I’m buying all expense paid vacation to Fiji.
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