I had a biopsy performed in Dec '16 because of a high PSA. A week later a text message appeared on my phone on Christmas eve informing me that results were available. I remember joking to others that night the results must be benign as - who would tell you on Xmas eve you have cancer via a website?
Didn't bother to check until the next day, but when I did, the results weren't good. Gleason 4+4, intraductal, perineural invasion....No call from doctor (he went on vacation).
After finding a new urologist, I had a body scan (clean), and was given the choice of two years of radiation + ADT, or RP, followed possibly by EBRT + ADT. I immediately went for RP, and had surgery Feb '17.
My prostate was removed and lymph nodes as well, and the news was as on balance good. Margins were negative, seminal vesicle clear, but I had EPE. The test of my tumor confirmed Gleason 4+4 intraductal, and I also had a Decipher test performed. My score of .91 was as high as I have seen, indicating I had 50% chance of BCR in 5 years and 1/3 chance of not surviving 10 years.
Following this I was diagnosed with thyroid cancer (yea!), and found the time to fit in 38 radiation sessions before my surgery (one more organ to remove). After my thyroidectomy, I had an ablation procedure in Dec '17. Nice way to end an exciting year!
So...nearly two years after my RP I just had my latest PSA, and it returned <.008! No sign of TC either. Very lucky so far.
Just writing my experience to provide hope. I especially want to root for those warriors who are in the middle of battling this disease in advanced stages. Truly brave and extraordinary human beings.
I recently had my PSA test performed and after three years since my RP, I am pleased and thankful to report that it continues to be undetectable (<.008). Given my original diagnosis, my expectations were that I had a tough road ahead. The year 2017 was a bit tough as in addition to recovering from RP, I had 39 radiation sessions to the pelvic area, and subsequently was diagnosed with Thyroid cancer. So one more organ came out via a Thyroidectomy, and that was followed up with radioactive ablation to destroy any remaining cancer tissues that may have lingered in my throat. That problem has also been resolved favorably thus far, so I feel very fortunate.
Like any life-changing experience, some wisdom, perspective, or whatever you want to call it is gained. And while there are many peices to this complex puzzle of going through PcA, I would say some key thoughts/considerations include:
1) First and foremost, obtain the services if a great Urologist/Surgeon (if you go the RP route). I had an aggressive form of cancer that required a particularly skillful surgeon. My surgeon (out of Yale) worked tirelessly and with great skill during a five hour operation. I am convinced that without his skill I would not be celebrating a three year PSA-free life.
2) If you read every journal you can get your hands on as I did, don't get freaked out by some of them. Many of these journals are dated. Statistics are dated too so understand great strides have been made that have improved outcomes. Be hopeful.
3) Get a Decipher test done if you have a RP. Mine came back .91 (very, very high risk), and that was the reason we decided hit whatever might be left over with 39 radiation sessions.
4) In my case, after going through a hellish 2017 with promising outcomes, I went through a period in 2018 where instead of feeling elated sort of felt like I had PTSD. That took longer to resolve than it would have had I not turned inward. Took a lot longer than it should have to start feeling better.
Everyone's situation is so different it is hard to predict what you will go through. These are just a few suggestions based on my experience. All the best to my fellow warriors (yes we are) as you battle PCa.
Cancer free for 5+ years! Can't thank Preston Sprenkle and Yale staff enough for the great work they did. Based on my PCtype and geonomics test, I had 50% chance of metastisis in five years. I thankfully got the good side of the coin.
If anything I can offer hope to those who are in the state I was in five years ago. God bless!
Harry's e-mail address is: hjmnewtown AT yahoo.com (replace "AT" with "@")