I was diagnosed a few days ago with prostate cancer.
Doctor said it was "really bad", and "pretty aggressive" form.
I'm 49yo, in otherwise good health.
Gleason 9 in two areas of the prostate
CT revealed metastasis to pelvic lymph node chains and possibly a portion of urinary bladder.
Bone scan reveal metastasis to a spot on the skull and on the right humerus, and possible first rib.
X-ray reveals no changes to skull or humerus bone structure of any kind.
Lungs, liver, pancreas and kidneys looked fine.
And this is all I have been thinking about
I have a consultation with the urologist who ordered the scans in 4 days but I'm trying to move this up and also get a second opinion from someone who specializes in oncology and I want this, like, tomorrow.
I bought Dr. Walsh's Surviving Prostate Cancer book, but it doesn't have a lot about
really aggressive/advanced PC treatment.
I'm very scared of what all this means.
And I'm really concerned about
how aggressive this is and if even waiting a few days will spread it more.
I have a 13 yo son and wonderful wife and I want to be around for a long time for them.
I need advice and support and hope I can find some here.
Thank you, FOUR YEARS LATER..... Update 9/22/2017
So it's been four years since I was diagnosed. Four years ago yesterday on Sept. 21 was my first appointment at Mayo Clinic. What an unpredictable roller-coaster these past four years have been.Quick Recap:
* September 2013 diagnosed PC, PSA 56, 11/12 biopsy cores were positive, most were Gleason 7-9, metastatic to distal bones and lymph nodes. Started on Lupron+casodex and X-Geva. PSA dropped to <1.0 within 5 months.
* Fall 2013 visited four cancer-centers, Mayo Clinic, AZ Oncology, MD Anderson and Dr. Schulz/Lam in L.A. Chose to stay with Mayo and had followups with Schulz for over a year.
* March/April 2014 PSA rose to over 1.0 and positive CT enlargement of pelvic lymph node. Stopped casodex, continued Lupron.
* April/May 2014 I did three rounds of Provenge immunotherapy and saw PSA drop to <0.75 immediately after.
* June 2014 started Zytiga+Prednisone and continued Lupron 4-month and X-Geva.
* Feb 2015 PSA became <0.10 undetectable.
Things are still good, more than good.
My PSA is still undetectable - this is now over 30 months of undetectable PSA, and 40 months that I've been on my current drug treatments and it's still working.
Mayo told me today "You're the patient we tell other patients about
to give them hope", which is a really good a feeling to hear. God has been very very good to us, so blessed.
My side-effects are still the same, lots of weakness and fatigue but I'm still able to work out and run (yesterday I did my fastest 1.5 mile run since before summer) so I'm still feeling pretty good, all things considered. I don't know if I can do a half-marathon again, but a 5K or 10K is doable I think.
My son was accepted to University last week majoring in Mechanical Engineering starting in fall 2018, and is trying to decide whether to live on-campus in their new dorms, or live off-campus or live at home. My wife has been such a incredible angel in my life supporting me the whole way, could never do this without her.
So things are doing very good. It's been four years, like a whole different life ago.
Again, facing this was devastating and I still have anxiety every 8-weeks anticipating bloodwork results. But it cannot and will not consume me.
I have it, it doesn't have me.
Reduce your stresses, find that anchor you can hold and have a reason to live for. Your spouse, your child, something bigger than you will keep you centered.
Live more, laugh more, exercise - stay physically fit as much as you can.
Think holistic - you are 3-Parts: Mind, Body and Spirit. Exercise ALL of you, all three parts.
I don't believe in "luck", I believe in "gifts" and "challenges" from God.
Have faith, practice faith, surround yourself with uplifting people of faith, and yes, even fake it if you have to. PRACTICE faith and you become better at it.
I have been so immensely blessed through this whole ordeal - such a incredibly long road, with the deepest darkest valleys and hardest days of my life. But somehow, somehow the past four years have also brought some of the highest peaks, brightest days and most joyous laughs in my life, and the strongest love with my family, in ways that I don't know if any other road could have revealed to me.
One of my favorite verses from the bible is, "All things work together for good to those who love the Lord." Somehow, this has worked for good in my life, or at least I know there is good that has come out of it.
So... things are still good. FIVE YEARS Post-Diagnosis..... update 10/5/2018
Still going strong!
PSA is still undetectable, all scans are clear, no signs of new bone mets or LN progression - God is good!
Treatments haven't changed, still on Zytiga/Prednisone daily, Lupron 4-months and X-geva. Get bloodwork every 8 weeks, scans every 16 weeks.
Side-effects are the same, still same activity-levels.
I'm feeling very blessed. SIX YEARS Post-Diagnosis..... update 10/24/2019
And I am still going strong!
PSA is still <0.1 (coming up on 5 years undetectable), all scans are clear, no signs of new bone mets or LN progression - God is so good!
Still on Zytiga/Prednisone daily, Lupron 6-month dose and still taking X-geva.
I get bloodwork every 3 months, scans every 6 months now.
Side-effects are the same, still same activity-levels. Run regularly, but I do bruise easily. If I happen to miss a prednisone dose, I will feel it in being more easily tired/drained.
I joined two genetic studies, where they took blood and analyzed my genes for any known cancer-causing gene variants. Out of almost 80 known genes tested, I had no known cancer-causing gene variants.which is a good sign for my son.
Another study took my genetic information and is now looking at pharmacogenetics, where they study gene associations with certain drug actions (not all drugs act the same in all patients, partly due to genetics). It's more focused on pure research.
And so I'm still here and still feeling so very blessed! My son is sophomore at University (Elec. Engineering) and my wife and I renewed our marriage vows this year, after 22 years!
Keep on keeping on! SEVEN YEARS Post-Diagnosis..... update 10/30/2020
And here we are riding out this insane year.... and still no progression!
PSA is still <0.1 (coming up on 6 years undetectable), all scans are clear, no signs of new bone mets or LN progression - God has been so good!
Still on Zytiga/Prednisone daily, Lupron 6-month dose and still taking X-geva.
I switched to 7.5mg Predinsone daily because I was getting too many bruises all the time, but my energy is still... "meh".
I get bloodwork every 3 months, scans every 6 months.
Somewhere early January I started losing weight, lost about
10-12lbs (~168 to ~155lbs) but my weight and appetite have been stable now since late spring.
My father passed away last month, at 90. It was a very very hard year on him, his dementia advanced quickly, his vision went to nearly blind and he had in-home care for most of the year. But he's in a much better place now, and with my mom.
But I'm still here and still feeling so very blessed! My son is now a junior at University and my wife is still my angel of my life!
Keep on keeping on! EIGHT YEARS Post-Diagnosis..... update 10/8/2021
God is so good! My prayers are answered every day and I know I don't deserve it but I am still here!
PSA is still <0.1 (close to 7 years undetectable now), all scans are clear, no signs of new bone mets or LN progression.
Still on Zytiga/Prednisone daily, Lupron 6-month dose and I went off X-geva last year due to some dental work I needed done.
I am also just getting over two weeks of fighting West Nile Virus - that was a terrible beatdown, high fever, chills, body aches, nausea/vomiting and body aches - I think I slept for at least four days straight... that was brutal. But I'm over most of it now just still have the fatigue and weakness.
My wife and family has been such a blessing of support for me.
So sharing the hope and prayers to all of us that there is more out there.
Post Edited (jcjames) : 10/8/2021 11:10:24 PM (GMT-6)