Today is my 5th anniversary since being diagnosed with advanced PCa. Currently 4-months into an ADT holiday. No PSA detectable for 29-months!
Seems like just yesterday I heard those words, “you’ve got cancer.”
Starting with a 227 PSA and 1 met in my spine, I’ve had radiation to the spine, 6 rounds of chemo, 4 1/2 years of ADT, a prostatectomy, and implanted a pacemaker.
Worth every bit of it! Amazing what they can do to treat PCa these days. I’m incredibly fortunate. I hope my experience gives hope to others. Keep fighting. You can beat this thing!
Best wishes to all! And thanks to all the members here who have given me invaluable advice to help me get to this point!
James
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JamesAtlanta
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Way to go, James! You've attacked the beast and you are winning! Wishing you 5 x 5 more years!
Congrats James ! Five years is a mile marker . I also reached it two months ago myself ..Gratitude is key .. Enjoy and ride the good tide.. good luck on vacation . May your T return .. 🥳🕺
You are doing great! My advice is to watch the PSA carefully now. And if it starts rising do NOT allow the doctor to wait until it hits 2.0 or 4.0 before requesting a CT scan or PET/Axumin scan. If the trajectory moves rapidly then you must move rapidly to re-introduce ADT, too (that's what I did).
Absolutely love hearing about your great milestone. Your journey does give "youngsters" like me, who is at my 2 year mark, a lot of hope and inspires us to continue the fight. All the best to you.
That's great news, but I would proceed with caution. My T started approaching normal at 6 months into my ADT holiday and at 9 months, my PSA was off to the races with mets in the sacrum and 4 vertebrae. Like tallguy2 said, if there's any movement of the psa needle, act quickly and get back on the ADT.
I remember 3-months in. My head was still spinning. I would read things on the internet (had not found this forum yet)...I had NO IDEA what anyone was talking about. Quite a lot to learn. It can be overwhelming. But you can do it! Just one step at a time!
And the help here from fellow brothers and caregivers is incredible!
Finally starting to feel a little better... It’s been 4-months. So you pegged the right timing! Hope to start being able to build back lost muscle mass soon. But walks and riding my Peloton has started to get easier.
At what point and why did your Drs decide to start chemotherapy? I'm 3 years into ADT and about to become castrate resistant and can't understand why this has not been advised for me?
I had chemo about 8-weeks after diagnosis. Studies had just come out recommending early chemo. So we took that aggressive approach. Since then, though, they encourage either early chemo or Zytiga along with ADT to be started early. This change happened after I had chemo.
I went from 227 PSA to undetectable over a period of a few months. After about a year, though, my PSA started rising about 0.1 / month. When it reached 1.8, my MO prescribed Zytiga. This took my PSA back to Zero for 2-years. After my prostatectomy (no sign of active cancer anywhere except my prostate), they agreed to my ADT holiday. I’m 16-weeks in and hopefully it remains undetectable (I have my labs again tomorrow 🤞🍀).
Hope this helps. I found my most aggressive treatment was at the direction of MD Anderson. Local MO’s administer “standard of care”...cancer center of excellence hospitals create the new standards of care.
Year 1 was radiation to the spine and early chemo, plus ADT.
Year 2 1/2 To 3 1/2 added Zytiga.
Year 3 1/2 was my prostatectomy.
Year 4 1/2 was my pacemaker (had electrical damage, likely from radiation).
Year 4 3/4 was start of ADT holiday - off all meds.
I’m “oligometastatic”, meaning I had 5-METs or less (I only had 1 - in the T8 vertebra.). They are challenging the “conventional wisdom” of no prostate removal after PCa spreads in oligometastatic patients. (The old horse is out of the barn...so no need to remove the prostate.)
Before the surgery I was given a circulating tumor test (nothing evident), a prostate rectal exam with a coil (ouch!), a PET scan and a bone scan. The cancer was “inactive” in my spine and there was no sign of cancer outside the prostate. So they said let’s try taking it out and see what happens. The tissue samples after the surgery revealed “clean margins”, too.
So, that’s how I had a prostatectomy ... certainly not the conventional route. But so far it’s working!
You will have many more anniversaries to celebrate. I was DX in 1996 PSA 95 and given only a couple of years to live. Here I am in my 24th year and still fighting PCa.
Great news! The 5 year survival statistic keeps clicking up. And that statistic is certainly out of date. I salute you, and our fallen comrades. Happy Mother's Day to all the awesome moms out there.
Way to go! I hate to ask this but how has your quality of life been? My husband is just starting all this. Had a prostatectomy in march. First PSA is 4.88. So probably more treatment to come. We are both afraid of the treatments. Sometimes my husband says maybe we shouldn't do anything and live life un till it spreads and then he dies.
I usually convince him that he will be alright. We will get through this. He is 61. Stage t3b.
I have found many of the treatments to be not nearly as bad as I expected. Chemo wasn’t too bad. I walked 3-miles 4 days after the surgery, albeit with a Foley catheter! So that was Ok. Had no side effects from Zytiga.
It is the ADT that really causes all the issues. But it also keeps us alive. So you just have to learn to live with it.
The most important thing is to get regular exercise and do some light strength training. Once you lose muscle mass, it’s really hard to get it back.
Hot flashes are awful. But you just have to think, I’m just a few minutes away from feeling great! And grin and bear it.
The worst is the loss of testosterone and the impact on having a sex life. (Or not having one.) That’s bad for the patient and their partner. Can’t really describe the “wrecking ball” ADT has on both desire and the ability to perform. You can’t really explain it. It goes to the core of being a man. That’s the toughest thing about this, at least for me.
I’m blessed with an amazing wife. She tries to understand. I’m praying this will get reversed during my holiday.
Tell your husband it’s worth it! You just get up, dust yourself off, and get on with life! That’s how we get to spend valuable time with our loved ones! And there isn’t really an alternative! Just do it!
Hope this advice helps. I know how tough this is. But we’ve all been through it, or are experiencing it now. So ask for help. Someone here has the answer to just about anything. And there is an incredible amount of support here!
Congrats on you great response ! Did you have to get a pace maker because of the heart effects of ADT? I started having heart issues after just a few months on ADT, and I am also now on an ADT holiday....6 months in.
Honestly they don’t know what caused it. They suspect the radiation, since they were hitting my T8 vertebra. I actually asked if it was OK to “shoot the radiation through my chest to get to my vertebra...”. I was told, “ yes, we do it all the time...”. So much for that... ( I had not learned yet that you have to really research and be a strong advocate for your own health. That’s an important lesson...)
But I’ve also had chemo and ADT. So who knows...
I don’t have traditional heart disease, at least that’s what my cardiologist says. He said last week that I just have an electrical issue that keeps my heart rate from elevating above about 110bpm. With my pacemaker, I can get my heart rate up to 155bpm. I even started jogging a little bit.
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