At diagnosis, I was taken by surprise. I felt wonderful, had no symptoms.
Surgery 8/10/2000. Pathology report: negative lymph nodes, organ confined disease, Gleason upgraded to 9. No follow-up treatment.
After surgery, I was significantly incontinent which has not ever improved. Also impotent.
2003 - rising PSA. Began pelvic radiation in summer of 2003 with a PSA of 0.24. Negative bone scans. Negative CT scans.
PSA lowest point after radiation 0.13 ng/ml in December 2003
In 2005, PSA began rising rapidly, reaching 22 ng/ml in October 2005. Lupron started October 17, 2005 - my 62nd birthday.
May 2006 - undetectable PSA - less than 0.03 ng/ml.
Plan: received 4-month Lupron on May 12, 2006 and plan to discontinue Lupron at end of this shot which will be 11 months on Lupron.
I work two full time jobs and, apart from the effects of androgen deprivation (fatigue, anemia, muscle aches, joint pain, hot flashes), I am well and happy.
I was on Lupron from October 2005 to September 2006. PSA went from 22 ng/ml to undetectable. I refused the injection for September 2006 and have been off treatment since then.
Now my PSA is rising. It was 1.69 ng/ml in April and I am due to have it checked within a few weeks. After I went off Lupron, my significant anemia resolved and I have been functioning fully, working a full time job as hospice chaplain and bereavement counselor and also pastoring a church.
Being too busy has often been good for me. Sometimes I don't know if my tiredness is due to work or age or PCa. Overall, life is good.
In September 2007, my PSA had risen to 7.57. I went on Lupron for 8 months and refused the May 2008 injection because my PSA had dropped to 0.04. Now, after 8 weeks off Lupron, I feel like my old self and my anemia is resolving.
After reaching PSA nadir of 0.04 in May 2008, I discontinued Lupron monotherapy.
September 2008 PSA 1.23, January 2008 PSA 4.88. Saw new med onc, put on Casodex monotherapy because Lupron had caused such severe side effects such as anemia, very high blood sugar, fatigue, arthritis flare. Bone scan and CT scans ordered for early March 2009. Casodex monotherapy will be re-evaluated for effectiveness in mid-March 2009. I'll report on scan results when I get them.
I feel great, not having had a Lupron shot since end of January 2008. I retired from hospice chaplancy and have only one full time job. Life is very good going on 9 years post diagnosis.
Since I last updated, things have gone on pretty normally. The regimen of Casodex (bicalutamide) 50mg/day has maintained a PSA between 1.85 and 2.5. All scans are still negative.
Since January of 2005, I have taken daily doses of Vitamin D of 8000 to 10,000 I.U. I am now borderline diabetic (personally I think this is from the time I was on Lupron) but managing with diet and exercise. My life is full and on August 10, I will celebrate 10 years since surgery. I am working full time as a pastor and traveling more often than I expected I would.
Unfortunately, my relationship has not survived the impotence. In May of 2009, I had an artificial urinary sphincter implanted (AMS 800 AUS) before two months traveling in Eastern Europe. I wish I had done it years ago.
It is now 12 years since my diagnosis. I stay on Lupron until my quality of life suffers too much and then I take a break. The treatment is still very effective and the PSA rises rapidly as soon as I stop treatment, going from 1 to 20 in a few months. Fortunately it comes down well. Scans are still negative.
Until last week, I was working a full-time job as pastor in the US, and also spending some months each year in Ukraine and other eastern European countries. As soon as I "retired" last week, I flew back to Kyiv, Ukraine.
I'm happy to say that I've never been sick from prostate cancer but the treatments have kicked my butt. I live a full life, having adapted to the impotence and incontinence. I would urge anyone who has significant urinary incontinence to have an artificial urinary sphincter (AUS) implanted. I've had one for 3 years now and it changed my life drastically for the better.
I love my life. I will try to live each day until there are no more days. I am grateful to Prostate cancer to waking me up to what's really important.
In a few days it will be 13 years since my radical prostatectomy. I will be 70 in a few months. I'm delighted to say that I live a full life, travel, and live in Ukraine for at least half of each year. I see my doctor 2 or 3 times a year and have Lupron as needed. After being off Lupron for several months, my PSA had climbed to 20 but fortunately Lupron is still a really effective treatment for management.
August 10 was the 14th anniversary of my prostatectomy. I live a full life and travel extensively in Eastern Europe. I have 2 four-month Lupron shots each year with a few months off treatment between shots. My July bone scan was negative. My CT scans err negative. My blood work showed some immature cells which is of some concern and will be monitored In my July cancer clinic treatment, my oncologist told the medical resident "everything that's wrong with this man, we caused by treatments." It was very affirming to hear that. In truth, I've never been sick from the cancer, only from the treatments. I feel fortunate and very blessed to be able to do everything I love to do. I do miss sexual intimacy and regret the growth of breast tissue from ADT.
I am happy to report that 16 years after diagnosis and surgery, I'm living a full life. I spend a lot of my time traveling around the post-Soviet space to support and encourage LGBT groups and individuals. It is quite interesting to be the voice of liberal Christianity in a very conservative part of the world. I'd be happy to answer any specific questions if you have any. Life is good.
In a few months, it will be 17 years since my radical prostatectomy. I'll be 74 in October. I continue to travel from my home in Ukraine to the States for twice a year 4 month Lupron or Eligard shots.
The last year has been an interesting one for me. Although sometimes my hips ache and it takes me longer to climb the 4 flights of stairs to my apartment in Krivyi Rih, Ukraine, I manage to do it with no undue problems. In July of last year, while traveling in Russia to encourage marginalized LGBT individuals and groups, I was arrested, interrogated, tried and expelled, giving five days to leave the country. I paid a $32 fine and have been banned from the Russian Federation for 3 years. It was a media circus and even made the Washington Post. I went to Poland from Russia and participated in activities to support LGBT during Pope Francis' visit.j
I am ok and live a normal daily life. My oncologist's desire is to see me die from something other than prostaste cancer. My bloodwork shows presence of immature cells probably indicating that the prostate cancer is lurking in my bones. I have refused bone marrow biopsies since that wouldn't change anything. I will continue my course of treatment as long as the ADT is working. I'll make decisions that seem right to me, as I've always done.
I encourage older men with prostate cancer to see a geriatric oncologist. My doc is more concerned with quality of life than anything else and never tries to pressure me into decisions. She is awesome. I will all my fellow YANA folks to be encouraged. We can live a good quality life in spite of having Prostate Cancer.
Jim's e-mail address is: revjimmulcahy AT gmail.com (replace "AT" with "@")