Connect
← Return to My Story So Far - 53yo / PSA 130
Discussion
My Story So Far - 53yo / PSA 130
Prostate Cancer | Last Active: Apr 22 7:53pm | Replies (28)Comment receiving replies
I'm 6 weeks post op on Monday. I'm 55 and was diagnosed roughly 2 years ago, I wavered greatly on my next steps back then. I didn't do a thing for a long time right away, especially from what I would frame as harassment from my 1st urologist. Their objective was not to assist me in making the best decision for me. I digress. Ultimately I did end up at RARP. It was the right decision, period. The advice that I received from my 2nd urologist in addition to viewpoints from several older men that were friends of mine I feel led me to the best and correct decision. This is how I looked at it..... most of the time all roads lead back to the prostatectomy. Both have similar side effects and in my opinion radiation can be worse. My cousin went thru radiation 2 years ago and it made his urethra incredibly angry.... scarring, etc that took a long time (months) to heal with the catheter installed. With the catheter installed it seems there is a recovery just from that. Ultimately it appeared to me that the potential for re-occurence is far greater post radiation and the possibility that you may still end up having it removed and the gift of going thru all or even more side effects yet again. I have been keeping a diary of everything I have went thru, not emotionally, but all of the stuff I was not informed or prepared to experience. I will gladly share my road thus far if you are interested. One thing that shocked me just 2 days ago..... read on..... I have been experiencing mild to severe insomnia post op. Just for fun, I googled it in relationship to RARP and of course, wouldn't you know...... over ONE THIRD of prostate removal patients experience mild to severe insomnia!!!! How these 2 things are so intimately connected baffles me!!! I think you are on the correct path by having it removed. I chose the path to get me the longest quality of life possible. If you would like to know more, by all means, let me know. It is helpful reading here everyone's experiences and frustrations and knowing there is a path forward for a normal, happy life.
Replies to "I'm 6 weeks post op on Monday. I'm 55 and was diagnosed roughly 2 years ago,..."
@hawkeye612 This was so helpful. Thank you. I hope your recovery is going well and would love to hear your story. Was your decision for surgery based solely on the side effects your friend experienced from radiation? We had our radiology consultation today and the (very lovely) doctor felt that side effects could usually be mitigated. He did identify the issues your friend is unfortunately experiencing as a possibility. Thanks again for sharing. Best wishes for your normal happy life ahead, as you properly state!
Connect
@hawkeye612
You don’t mention anything about your case. What was your Gleason score? Did you have a PSMA PET scan to see if there had been any spread. Did you have an MRI before your biopsy?
Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.
Did you get a decipher test to see if you have a reoccurrence possible and if so, how long before it’s likely?.
Did you get a hereditary, genetic test? Getting prostate cancer as young as you are could be because of genetics, I got it at 62 because my father died from it and my mother gave me BRCA2. My brother got it at 77 because he didn’t have BRCA2. Were there any cancers in your family breast cancer, Prostate cancer and pancreatic cancer Are frequently caused by genetics and makes the test even more necessary. The test is covered by insurance many medical facilities require this to be done, especially for somebody that gets prostate cancer so young.