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.

I wanted to provide a recent update. My PSA is still undetectable as of Oct 2017. I get checked every 4 months and get anxious before every test. With the positive margins etc. I kind of feel it's only a matter of time before it starts to rise, but that's my less optimistic side talking. For every undetected PSA I am thankful that I do not have to return to Lupron. I still get minor hot flashes that wake me up a couple of times a night. This is even after being off Lupron for 2 years. But my strength has come back and my fatigue has reduced considerably. I'm coming up on 4 years of being undetectable after surgery in Oct 2013. It amazes me that I am doing so well. Gleason 9/10 with all the +'s can be really mean. So maybe the aggressive treatment of debulking the tumor, ADT and radiation has been right for me. I'm really trying to enjoy all the little things in life that that make up our whole life. There is so much to appreciate and enjoy if I take the time to look. God Bless.

I was recently tested and my PSA came back at 0.07ng/ml. This is the first time since Jan 2014 that it was not < 0.01. So my MO said I should be tested again in the next month. If there is a significant increase he will order scans. If possible any "mets" identified will be treated with spot radiation (or CyberKnife). Hopefully it will be slow growing but Gleason 9/10 usually doesn't behave that way. So we'll see. I've had 4 undetectable years and am thankful for that!

My PSA went from .07 in July to 0.1 in September and 0.2 in October after being undetected for 4.5 years. I met with a urologic oncologist that was highly recommended by a friend here in Arizona. Dr. Nelson ordered an Axumin Scan which was clear and prescribed Dutasteride 0.5MG 1/day. It is a generic for Avodart. The thought is that it will slow the PSA progression and delay the need for ADT (Lupron). It is primarily used for BPH but apparently it can slow down the cancer growth in the early stages of recurrence. Since I absolutely hated Lupron this treatment works well for now. I will have my PSA tested in 3 months and go from there.

I wish you all strength and success in your personal battle with this enemy!

I just received the results of my 3 month PSA test and there is no increase. I am still at 0.4. Apparently the Dutasteride is keeping the recurrence rate in check. So I will keep taking it for another 3 months and check again. I take 0.5 MG by capsule once per day. I'm happy since this keeps me off the heavy duty ADT longer!

My PSA just came in at 0.9 ng/ml which is a little more than double from my late May test. I still am taking Dutasteride 1/day and will be checked in Feb 2020 to see my PSA continues to climb. If so, the oncologist says that at 2.0 ng/ml I will have a Axumin PET Scan to try to identify the mets. Hopefully, It or they can be spot radiated and keep me off of ADT longer. I have liked taking Dutasteride because it can slow the growth of aggressive recurrent cancer if caught early and has no side-effects that I can identify. In 3 months I'll see if it is still effective.

I met with my urologist on March 16th and my PSA is still rising. He said at 1.6 it is still too low to have a PET scan. He recommended continuing with Dutasteride 0.5mg/day for the next 3 months and then recheck PSA. If it is over 2.0 he will order a Axumine PET Scan. If one lesion is found outside the previously radiated prostate bed we will consider "spot" radiation. If more are found then he recommends hormone therapy.

PSA came in at 1.52. I anticipated an increase or maybe a doubling but not a slight decrease. Doctor wants another PSA in a month. After a rise to 2.0 have an Axumin Scan.

My PSA ng/ml has risen from 1.5 in July 2020 to 2.3 in Oct 2020. I'm currently still taking 0.5 mg of Dutasteride once/day. That drug seemed to keep my PSa low for about 2 years with no side effects. I will be getting an Axumin PET Scan Dec 1st to see if any mets can be identified. I have an oncologist appointment at Mayo Clinic (Phoenix) on Dec 17th. I expect the doctor will want to start me back on hormone therapy but I'm mentally struggling about that route. I love to mountain bike and be outside and currently have the energy and desire to do that. When I was on Lupron for 2 years (2013-2015) I lost all desire to do anything physical. I forced myself but just found I was going through the motions and not passionate about anything. So I really don't want to go down that road again. I may see if I can delay HT or at least will ask how much does HT really extend my life and see if it's worth it to go through the QOL issues. If there are spots that can be removed or radiated then I may do that to maybe buy some time, if that really does buy time. I know alot of us have a tough road to go down in life. Right now I am trying to focus on being thankful for making it 7.5 yrs and know "My times are in His hands", Psalm 31:15. I'll update when I get information on the PET Scan. Don

As my PSA has continued to rise, I have consulted with an oncologist at Mayo Clinic in Phoenix. Since there are currently no visible mets shown on my Axumin PET scan the Dr. recommended that I enter a clinical trial called AFT-19 (NTC03009981) which is a Phase 3 study of ADT plus 1 or 2 additional drugs. It is for high risk biochemically relapsed prostate cancer. There are 2 arms:

A. ADT

B. ADT plus Apalutamide

C. ADT plus Apalutamide and Abiraterone acetate/prednisone.

THe B and C drugs are approved for more advanced cancer but are being looked at to see if they benefit hormone sensitive patients with no visible mets. For more advanced cancer it seems they extend life 14-22 months. My PSA doubling time is slightly over the required doubling time of under 9 months so the Dr. wants me to wait and have a few more PSA checks to see if I qualify, which I should since my doubling time is ramping up over the last 3 tests. The other option is to start ADT now.

My thoughts are to wait for the next few tests and enter the study to help with research and see if it benefits prostate cancer patients in our position.

So I was almost accepted into the clinical trial in May. The medical oncologist at Mayo said my doubling time was 5.9 months so ordered a CT and Bone scan to see if there were any visible metastatic spots which would disqualify me from the trial. Well... my L4 vertebra had a spot and my retroperitineal lymph nodes showed abnormal uptake so no trial for me. The oncologist started me on Eligard (Mayo was out of Lupron) in late May. In July my PSA was down to 0.3 from 4.8 so I am responding to treatment well. Next step is to get a Auxumin Scan when PSA rises to above.5 and see if mets can be spot radiated. Maybe add Zytiga later as well. Just dealing with the usual side effects which I don't like at all. But better than alternative.

Since my Eligard shot in May 2021, my PSA dropped to 0.3. It never reached undetectable <0.1. We spent 7 months away from Arizona up in the Pacific NW. I was able to have my PSA checked twice up there by my wife's radiation oncologist. Now back in Arizon in the Tucson area I decided to go to the University of Arizona Cancer Center where I met with a Dr. Edward Gelmann. He is very experienced in advanced prostate canccer treatment. He is recommending I have another 6 month ADT (Lupron) short and start Apalutamide (Erleada). He says I have low-volume mets and should live a number of years and probably die from something else if I continue treatment.

So on Tuesday, Feb 1st I will get another 6 month ADT shot. A nurse coordinator is working various ways to get the co-payment for Erleada down to something reasonable. Apparently it's $3,000/month. I'm not going to pay anything close to that. I don't enjoy this world enough anymore to pay that kind of money to stay around.

I HATE ADT. Side-effects are: at least 15 hot flashes a day. 5 of them wake me up at night. Some depression to the point of not wanting to continue with treatment. Weight gain and especially fatigue. It's the kind that when you rest and you wake up and you are still tired. I make myself walk, bike and lift weights because if I don't, I feel terrible. But then if I exercise to much I feel terrible. So I have to find the right balance.

I'll update after I've been on Erleada awhile (if that happen). I guess the good news is that there are drugs to keep this in check for maybe a long time.

I will update after I get my labs done next week to see if my liver is processing the new drug efficiently.

I have been on Erleada (Apalutamide) for 3 months and it has brought my PSA down to undetectable. On Lupron alone, it was 0.12 in Jan 2022. So adding Erleada has had a good effect on PSA. I can't say adding it to Lupron has made side-effects like fatigue much worse. I do experience some more fatigue and now have some skin rash in places. The rash should go away in a couple of months. I started taking Erleada in the morning but switched to evening doses and that has made the fatigue more tolerable. It definetly is worth taking Erleada so far since it is the first time I've been undetected in 4 years. We'll see how long it works!

I've been on Erleada since Feb 2022. This was added to Lupron which was started in May 2021. My PSA is still undetectble but since starting Erleada, my cholesterol has risen to high levels and my thyroid has caused me some problems. I've been taking Levothyroxine for years and now had to have the dosage increased. My TSH Reflex to free t4 jumped from 3.5 in Jan 2022 to 16.765 in Sept2022. the high range is 5.5. So I don't know what that means but PCP NP raised my Levothyroxine. I was told to start a statin for cholesterol but so far have resisted.

I have now moved to the NW and have made an appointment at UW/Fred Hutch/Seattle Cancer Care Alliance with Dr. Evan Yu. I recently watched a video of him discussing treatments for advance recurrent prostate cancer and he seemed brilliant. So we'll see what he decides to do with my treatment on Nov 21st.

I met with Dr. Evan Yu and Fellow, Dr. Reed at Fred Hutch/UW Medicine on Nov 21st. It was an excellent appointment. Dr. Reed had dug into my PCa history thoroughly and was very easy to talk to. Dr. Yu recommended I switch from Apalutamide (Erleada) to Abiraterone (Zytiga) due to my increasing fatique, low mood, and thyroid issues apparently coming from Erleada. So I did get 8 months on Erleada and now will be starting Zytiga and Prednisone this week.

If you are in the NW, I highly recommend Fred Hutch/UW Medicine. They are extremely professonal, efficient and caring.

I'll update in a month and two and report how the Zytiga is working.

God Bless

I met with Dr. Yu again on Jan 9th and we are pleased with the results. My PSA is < 0.03 which at Fred Hutch/UW Medicine is considered undetectable. My blood metrics are great. My mood has improved (from being on Erleada) and my energy levels seem much better. I still get tired and can wear myself out by overdoing things but I generally feel much better. Next meeting with Dr. Yu is on Feb 23rd when I'll also get my next Lupron shot. I hope Zytiga works for a long time!

I started Zytiga in Dec 2022 and was able to stay on it (along with Lupron) until Nov 20, 2023. On that day I had a major meltdown physically and mentally. I am not sure if I was fighting a virus that added to my usual fatigue, but I just reached a limit and decided to throw out my remaining Zytiga pills. I felt that I wasn't truly living with all the fatigue and lack of spark for living. So I weaned myself off of Prednezone for the next 10 days (but quit Zytiga cold-turkey). I'm probably the "turkey" for doing that, but I have felt so much better. My 3 month Lupron shot was due around mid- Jan but I have rescheduled the shot and seeing the oncologist until Feb 16th. I am hoping that my PSA will still be undetected and that I can take an ADT break for a little longer. It seems like I can handle ADT 2 drugs for about a year before they get too much for me. I was on Erleada for a year prior to Zytiga but it sent my Thyroid levels rocketing skyward. After quitting Erleada my levels came back to normal. Zytiga has been fairly easy until Nov 20th when I broke down. I was going to stop all treatment, thinking that not wanting to do anything in life is a life not worth living, but I will probably try Zytiga again and see how much longer it works. I've read that ADT2 works about 2 years, so maybe I'm close to its effectiveness anyway. It's just so hard that after being so active in life, to feel like everything is overwhelming and hard. That has been the main side-effect for me. But, ADT 2 along with Lupron has kept the cancer undetected for another 2 years so it has been effective. My body just gets worn down overtime.

I will update after my oncology appointment on Feb 16th.

Well, I had a good result on my latest PSA, <0.04. All my blood work was within normal ranges.

I met with the oncologist (Dr. Hiba Khan) at Fred Hutchinson/UW Medicine on Friday, Feb 16th. She was very supportive even when I told her about throwing out my Zytiga in November. She said she understands how difficult the side-effects of these drugs can be to handle but that I should never hesitate to call and tell her what is happening. She can help whether I continue treatment or not, she is my oncologist and wants to help me get through this. She said that for now I can stop treatment and when my PSA hits 0.02 she will order a PSMA Pet Scan and see if the cancer spots are few enough to radiate. I will have to go back on ADT/ADT2 at some point, I'm sure but for I get a break!!! I'm thankful and rejoicing for that!

I had my 3 month oncology appointment on May 20, 2024 and the Dr. was very happy that my PSA came in at <0.04 or undetected. My Testosterone came in at 7. Normal for me should be 240-550 +/-. Dr. said low testosterone is keeping cancer from growing. I get another 3 month break from treatment, which makes me VERY happy. I feel much better with Lupron (stopped Jan 15th) and Zytiga (stopped Nov 20, 2023) leaving my body. I still get fatigue, but my overall mental health is far better. Plan is still to wait until I get a detectable PSA and then have PSMA scan to see if I have spots the can be radiated. I know ADT2 is in my future again, but this break is wonderful!

Don's e-mail address is: donjirucha AT gmail.com (replace "AT" with "@")