My primary doctor ran a PSA test as part of an annual physical. I had avoided annual physicals since I was very healthy and in the best shape I thought I could be in since I mountain biked almost every day and ate healthy. Cancer was just not possible in my thinking. I was too healthy! But my doctor held me captive and would not renew a prescription unless I came in to see him. He felt some hardness on the DRE and PSA came back at 12.7. Next step was a biopsy which came back with 11 of 12 cores positive, 80-100% Gleason 4 + 5's. Initially staged as T2a.
Next I met with Urologist Dr. David Crawford at the University Of Colorado Hospital (UCH) Anschutz Cancer Center in Aurora, Colorado. (I was living in Colorado at the time of diagnosis.) He started me on Degarelix in July 2013. My PSA was 14.0. His plan was to see if ADT would shrink the tumor and then do cryosurgery or radical prostatectomy after 3 months of ADT. My PSA on ADT dropped to 3.7 in 3 months. The UCH cancer review board thought surgery would be the best option. Dr. Crawford thought 'debulking' the tumor was the best approach. He didn't promise a cure but was wanting to do what he thought would keep me alive as long as possible. My scans were clear with a couple of small suspicious spots that did not shrink on ADT.
Oct 2013 I had RP. Final Pathology came back as Gleason 9-10, stage T3B NxMx, SVI+, LVI+, EPE+, PNI+, and positive margins. PSA 3 months after surgery was 'undetected, and has remained so until today.
I continued with ADT until June 2015. Due to the positive margins I was encouraged my Medical Oncologist, Dr. Thomas Flaig (UCH) to consider ART. I did 62gy in Nov/Dec 2014.
So I have made it over 3 years since my diagnosis. My RO & MO gave me slightly over 50% chance of surviving 5 years. Thankfully, I have responded well to treatment.
That said, ADT was very hard on me. I gained close to 20 lbs. and went from being able to ride any mountain in Colorado to barely able to go an hour on moderate trails. I lost muscle mass in my legs and gained fat in my stomach. I have been off ADT for a year and have been getting leaner and stronger but I in no way back to where I was before all this happened. I still get hot flashes and fatigue. But I do have hair on my legs, arms and chest again!
Surgery was difficult. I could not have robotic due to a previous abdominal surgery (too much scar tissue) so had a radical. I regained continence within 6 months. Nerves were spared on one side so there is hope in that department with ADT side effects diminishing.
Radiation went smoothly but I did have radiation cyctitis in April 2016 with heavy blood in urine. It has resolved itself with no medical intervention.
So that is my story up until now. I am thankful I was able to go to a major cancer center (UCH) and getting excellent treatment from my URO, MO & RO. I know surgery was probably not the choice most would make with my situation but it seems to have been the right one for me (along with ADT and maybe ART). I also know what I am up against with the final pathology report after surgery.
For those newly diagnosed, I would recommend going to a major cancer center (like a university teaching hospital) if possible. Especially for an aggressive cancer. Having doctors you know are involved with the latest research and treatments is very important. Your emotions will be all over, up and down, fear & hope, confident and afraid, happy & sad. Really facing your own mortality is not pleasant and is scary. I am thankful I was given daily strength from above to help me get through some of the low points.
Please feel free to email me if you have questions.
I just received my 6 month PSA and it is <.01. My free PSA was <.02. I feel relieved since I am now into my 4th year since my diagnosis. Back in 2013 both my urologist and radiologist gave me slightly over 50% of being here in 5 years. At least as PCa is concerned. But I had some great care at the University of Colorado Anshultz Cancer Center. The tumor board there had me hit it hard with surgery, ADT & IMRT since I was a Gleason 9-10 and a T3b and had a bunch of positives (EPE,Margins,SVI,PNI etc.). My urologist, Dr. David Crawford, wanted to "debulk" the tumor or get rid of the cancer mothership. I could have gone with radiation right from the start but when I look at how ugly my Gleason 9/10 cancer looked on my biopsy picture I am glad it's not in me anymore. And it seems like the treatment has worked for now. Also they thought I was a T1 before the surgery.
I still have hot flashes even though I've been off of ADT for 2 years this month. But my strength, muscle mass and endurance is back. This spring I completed a bucket list item of mountain biking 50 miles on one ride. I felt it was a privilege to be back biking and building my strength and endurance to such a point that I could finish such a long ride and enjoy it. Most rides are much less in mileage but I love having the desire to be active which I had lost from ADT. I also have lost close to 20 lbs picked up from ADT.
My one fear is that the cancer will return. I NEVER want to do ADT again. I was one of those who was hit very hard with the side-effects. I've even thought of not doing the next step in treatment if my PSA rises but I guess I don't have to face that decision for another 6 months when my PSA is checked again.
I hope this helps some of you. This is a tough battle physically and emotionally. I hope and pray for the best outcome for all of you.
Don's e-mail address is: firstname.lastname@example.org