I want to give a nod to the folks who run this site. The amount of information on prostate cancer here is amazing. This information and the stories of our brothers has been invaluable for me.

My father had prostate cancer and my mother had breast cancer. I had always assumed cancer was in my future, but at the same time I always ignored the risk and rarely visited my PCP.

Over the years my urgency to pee increased. I assumed it was due to BPH. When it got to the point that I was getting up 4x per night to go to the bathroom I saw my PCP. She recommended a DRE and a PSA test, especially considering my father's prostate cancer. I declined, citing that government panel of 2012 which recommended against prostate cancer screenings. She was unhappy about by my refusal, but did give me a prescription for the frequent urination problem. The prescription didn't work and I waited another year and one-half before I visited her again. At this visit she insisted on doing a DRE. She said that my prostate felt hard and she insisted I do a PSA test. She also said she would refer me to a urologist. I did the blood draw and then I heard nothing for 5 weeks. Finally, her med asst called and with an urgency in his voice he said my PSA was 20.8 and I would be receiving a call from the urologist's office. That night I looked up my PSA score on the web and I had a wave of numbness roll through my body. Thus, the start of my unwelcome journey through the world of cancer.

My uro did a DRE and exclaimed "there's a big ol' nodule on the left and one on the right too!" After he removed his hand from my butt he looked at me told me I probably have cancer but a biopsy would be needed to know for sure. This was my initiation to his charming bedside manner, with many more such experiences to come.

My uro did the trans rectal biopsy two weeks later and it wasn't a big deal. It literally only took about five minutes to perform. The only time it hurt was when he injected the numbing agent into my prostate. DEFINITELY request a numbed prostate for the biopsy; my understanding is that not all uros do that. I returned directly to work after the biopsy. My next appt was in three weeks to discuss the results of the biopsy and treatment options. My uro said he would call me as soon as he received the biopsy results. He didn't.

Three weeks later when I met the uro he told me I had cancer, which I expected. I didn't expect the extent of the cancer. All 12 cores positive, with 11 of 12 cores 80-100% cancer. GLEASON WAS 4+3=7. Cancer was extended beyond the capsule, in the nerves, and probably in the seminal vesicles.

So, my urologist said that due to the high volume of cancer in my prostate, AS was not an option. He recommended a non-nerve sparing RALP to get the bulk cancer out. This would be followed by EBRT because he predicted my surgical margins would be positive. While my head was spinning from hearing all of this stuff he displayed more of his "charm" by telling me that even though the surgery would result in complete ED, he could install fillable bladders in my penis that would turn me into a sexual superman. This guy's bedside manner was horrible. He spent maybe 5 minutes talking to me. So anyway, he arranged a bone scan, MRI and appointment with an RO. The MRI indicated positive seminal vesicles but nothing in the lymph nodes. The bone scan came back clear.

Visit with my RO was good. She's a great communicator. Took the time to thoroughly explain everything to me. She agreed with my Uro/surgeon. My best outcome would be the RALP followed by EBRT. ADT is almost always used when EBRT is the primary treatment. The decision on whether or not to use ADT when EBRT is a secondary treatment is a source of contention. Some ROs insist on it; others don't feel it is necessary. My Uro, RO, and MO agreed that because my EBRT was being used as an adjuvant therapy, coming only 8 weeks following my RALP, ADT wasn't necessary. I desperately want to avoid ADT unless it becomes absolutely necessary. It's a big QOL issue with me.

So, even though I don't personally care for my Uro, he's done over 700 RALPs and I feel comfortable with his surgical skills. I had the RALP done in June 2015. The pathology report upgraded my Gleason to grade 8 with focal points of grade 5. SVs, margins and bladder neck were positive. 3 nodes were removed and were negative. The pathologist must have been skeptical about the nodes because he had them restained using a peroxidase assay, but they still came back negative. My post surgery PSA at 2 months was 0.2. At 4 months it was 0.1.

I started 38 sessions of IMRT 8 weeks post surgery and have completed the course.

Now, I begin the PSA waiting game. My PSA since surgery has been 0.2, then 0.1. I hope my next PSA goes to <0.1 and stays there forever. Having said that, I also realize that I have high risk cancer. There is a chance that I am cured. But there is a higher probability that there will be a biochemical recurrence somewhere down the road. If that happens I hope it is many years from now.

The year that has passed since my last update has not been a good one. I have had failed surgery and radiation therapies. Here is a summary of my PSA:

Initial (March 2015): 20.8

2 months post RALP (Aug 2015): 0.2

End of Adj. IGRT (Nov 2015): 0.1

March 2016: 0.3 (Major Bummer)

July 2016: 0.8

Oct 2016: 1.2

Dec 2016: 1.9

The treatment plan of my first oncologist was to let my PSA go to 20.0 (twenty), start me on Hormone Therapy (HT), and then "zap" the presumed bone mets with radiation. Though this is apparently a valid treatment philosophy I did not like it. The positive aspect is that it delays use the use of HT and it's negative side effects. I just didn't like the idea of letting the cancer proliferate. When I asked questions about the plan the oncologist told me to let him worry about my treatment. I did not care for his arrogance. Fortunately, he left and I have a different oncologist who discusses everything with me and patiently listens to all of my questions. The new oncologist said that if my next PSA takes another jump he will want to start hormone therapy. To be honest, HT scares me more than any other treatment I have received. The positive aspect is that it can slow the cancer down. I feel that I have entered the realm of this being a life and death struggle.

As a side note, I have been using Trimix for ED. It's not like it was prior to surgery, but it's a lot better than nothing.

As a high risk patient I had always expected a recurrence, I just didn't think the cancer would show itself again so soon. I always like to view the cup as being half full and I remain hopeful. My oncologist told me that the median survival for someone in my situation is 6 years. My goal is to still be providing updates to this site 10 years from now. As always, my gratitude to the site administrator here at YANA. Thanks for your hard work.

Good luck to my brothers in this struggle. If I can be of help to anyone, please feel free to email me.

My PSA has continued to increase since my last entry and on February 15th it was 11.4. I had CT and bone scans in July 2017 and February 2018. The scans are still not showing mets. I will have the scans again in August 2018. My treatment plan is to start Lupron + Zytiga when mets show up on a scan.

Good look to all my PCa friends. Feel free to email me if I can be of assistance or questions.

Well, it has been four years since my diagnosis, with many disappointments along the way. Failed surgery followed by failed radiation therapy. My surgeon had to take a wide cut and I have complete ED. TriMix worked really well but I developed Peyronies after about a year. Despite the disappointments I have been optimistic and have adjusted to my new normal fairly well.

My plan the past three years has been to monitor my PSA increase. My medical oncologist advised that if if my PSA velocity increased, or mets showed on a scan, or if I experienced physical symptoms, then it would be time to start lifelong ADT. My PSA took a big jump this month from 35 to over 60 during a three month span. The bone and CT scans still showed no visible mets.

I started Lupron and Xtandi this month. The average time for this drug combination to suppress the cancer is 48 month. The side effects of ADT can be tough. I'm hoping I'll be one the guys who experiences minimal side effects.

Don't hesitate to email me if you think I might be helpful. My best to all my brothers, and good luck!

Not sure where I left off last time. Hard to believe it has been five years since my diagnosis. Following failed surgery and radiation treatment, my PSA steadily increased for four years, reaching 64. My MO placed me on Lupron and Xtandi, which dropped my PSA like a rock to undetectable, where it has been for over a year. I will be on this palliative treatment for the foreseeable future.

Best of luck to everyone!

I don't recall my last update, but it seems like a long time since the site sent me a reminder.

I been on Lupron + Xtandi (Enzalutamide) for about 2.5 years and my PSA continues to be <0.01. Considering the seriousness of my situation, I decided to retire at age 61. I started annual infusions of Reclast to strengthen my bones.

That's about it. I'm still here, and I'm trying to live my life as best I can.

Good luck, Comrads!

Not sure how much time has passed since last update. The site used to send reminders but I don't think they do so anymore.

Nothing remarkable since last update. I continue to be on Lupron and Xtandi and hoping to remain undetectable as long as possible. Good luck with your treatments guys!

Forgot to add that I'm retired now and trying to enjoy life.

It's hard to believe it has been 9 years since my diagnosis. I'm now 64 years old. It would appear that I will make it to 10 years of survival, which was my goal at the start of this bizarre trip. At the time I thought I was being optimistic in my goal. But, much has changed since I was diagnosed. Primarily the sequencing of ADT (Lupron) and the 2nd generation anti-androgens such as Zytiga and Xtandi. Castrate sensitive men who start out using the Lupron/2nd gen combination are living much longer. I'm glad I picked Xtandi as my 2nd gen. It's really proving to be very effective through ongoing trials. See the EMBARK trial.

I've been on ADT for 5 years now. It has worn me down. Fatigue, muscle loss, loss of body hair, and my junk has shrunk to about nothing. But, my PSA remains undetectable. I have been taking Ritalin for a long time and it helps A LOT.

Hang in there Comrades, until next year.

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