When my PSA increased from 4.7 to 6.1 in one year, my GP recommended I see a urologist. On my first visit to the urologist, he and an associate felt something abnormal during the DRE (Digital Rectal Examination) and scheduled a biopsy. To my complete surprise (shock) the biopsy came back positive for PCa. Of the 12 samples, three were negative for PCa, one was Gleason of 3-4, and eight were 3-3. My urologist, Dr. Moul at Duke Medical Center, said he would recommend surgery, and I think he said he could most likely remove all the cancer. I was so much in shock that I didn't do a good job of asking questions, and strongly recommend anyone in my situation take another person along for an additional set of ears.
I have since seen a radiation oncologist who said she felt the cancer WAS outside the prostate based on her DRE and that if I chose surgery I should certainly count on radiation follow up. Again stunned, my wife and I are confused about the inconsistent information we've received. I completed a bone scan yesterday (June 6, 2008) and will wait and worry until the results are back. What a ROLLER COASTER!!!
Since my last post I have received the results from an MRI and bone scan which thankfully, show no evidence that cancer has gone beyond my prostate. I have also gotten the results of a recent PSA test which shows PSA has reduced from 6.1 to 5.7. I'm not sure what to make of that reduction although it sure beats going the other way. I have made pretty radical changes in my diet and exercise routine since suspecting cancer in March 2008 so maybe that has helped.
There is disagreement between the radiation oncologist and the urological surgeon about whether I am T2c or T3 and I hope to get that cleared up at my appointment with the surgeon next week. I am also going ahead with scheduling a visit to M.D. Anderson for a second opinion. I am leaning towards open surgery followed by radiation if necessary.
It has been less than 30 days since my diagnosis but it seems like months.
Later: June 26, 2008: My wife went along with me today to my third appointment with Dr. Moul at Duke.
After looking over all the tests completed since he last saw me and doing another DRE he feels my staging is T1c and that surgery will have a good chance of getting all the cancer out. He answered our many questions and did a great job in plain language of explaining how the surgery works and what to expect regarding incontinence and sexual function post surgery.
Based on the research I've done, along with a strong dose of intuition, we chose Dr. Moul to do the surgery and are scheduled for July 16, 2008. I feel a great relief and know that I've have made the right decision for me. Duke Hospital is all of twelve minutes away for us, a huge advantage I think, and our experience there has been great.
My surgery went well, although I did have unexpected blood loss and took two units. I had surgery early Wednesday morning on July 16th and went home Friday. The care at Duke was excellent and for me, open surgery was the best. I have now received the pathology report and heard the wonderful words "organ confined" and no cancer in lymph nodes or the bladder neck. Dr. Moul also said that the "protrusion" felt by a radiation oncologist was not where cancer had broken through, but just a slight abnormality in my prostate gland.
I'm moving around well, climbing stairs gingerly, and able to begin some routine things like paying bills and getting my own food and water to give my wonderful wife a break. I was unprepared for the loss of appetite for several days after surgery, forced myself to eat, and am now back to enjoying some foods. We're still moving towards eating vegetarian although one day I ate bacon because that was all I could eat.
I get the catheter out next Tuesday and am looking forward/nervous about learning to pee again.
Thanks so much to all from the YANA website that have contacted me - it has really made a difference to know other men have been through the same stuff.
I am recovering quite well, am 99% continent, and have no soreness from the surgery.
I just learned yesterday, Nov 4, 2008, that my post surgery PSA count is less than 0.1. What a relief!! I will go back for a follow up visit in February and in the meantime I plan to enjoy life one day at a time.
Thanks again to those that share their experience on this website.
February 27, 2009: Another big sigh of relief after my PSA test this week. I am about 7 months past surgery with PSA still <0.1. I am grateful most every day, realizing that I was very lucky to have such a good outcome.
I still have some stress incontinence but not enough to complain about. Still no erection, but a little more "interest" shown by the retreating turtle called penis. I am also exploring which food or drink is a bladder irritant for me: Citrus juice for sure, maybe coffee (not giving that up!), and various spicy foods. It's such a weird feeling when a bladder irritant causes leakage - no warning, no control. Still, no complaints - just investigating.
May 25, 2009: Had my three month PSA test Tuesday and got the uplifting call reporting my PSA is still undetectable, or <0.1. I don't think I'll ever get accustomed to the waiting and suspense. I fully expected good results but you never know.
I have slight incontinence when lifting or hiking strenuously, but nothing I can't deal with. No further progress on sexual function but I'm still hoping.
Overall, I consider myself very fortunate, and try to maintain my gratitude for each day.
March 4, 2010: I continue to have <0.1 results of PSA screenings, the last done two months ago. My health is good, other than the stuff that comes with being 63, and I rarely even think about prostate cancer.
I decided to do this update because of reading this morning about the new guidelines from The American Cancer Society about screening for prostate cancer. They now recommend education rather than an automatic yearly PSA test and DRE. [This is not correct. The relevant item says: "Screening should be conducted yearly for men whose PSA level is 2.5 ng/mL or greater. For men whose PSA is less than 2.5 ng/mL, screening intervals can be extended to every 2 years." To read the full guideline and the thinking behind it, rather than biased media reports go to American Cancer Society Guideline for the Early Detection of Prostate Cancer: Update 2010]
Based on my experience I strongly disagree since catching the cancer early has made a huge difference in my recovery. It may be that statistically my outcome is rare, but I think that if even a small number of men can be spared the misery of treating advanced prostate cancer, it's certainly worth the discomfort of the DRE (Digital Rectal Examination) and a blood test. I do respect the work of The American Cancer Society but will continue to strongly recommend an annual screening to men I know. Many thanks to the operators and members of this forum.
The primary news since last post is that my PSA count continues to be undetectable.
I am waiting for surgery on an inguinal hernia caused by heavy lifting in January 2011. There is some speculation that men who have had a prostatectomy are more prone to develop an inguinal hernia - my surgeon is not convinced.
Only very seldom do I have incontinence, always caused by either a sudden, unexpected movement, or drinking too much caffeine or citrus. Since it only amounts to a couple of drops, it's no big deal to me.
Overall health is good, enjoying the semi-retired life.
The time between the PSA test and getting the results was about a week, and you'd think I could relax by now, but not. I still believe that open surgery was the best choice for me, and would choose that method again. Great to continue good health in all areas - a blessing for sure.
It's been almost five years since my surgery - hard to believe. I am in overall good health and with my annual report of PSA being good, am grateful.
The good news is that my PSA tests still register "undetectable" and I'm coming up on six years post surgery. I still breathe a sigh of relief each time I get my tests results. Unfortunately I'm now a "double winner" with cancer, having been diagnosed with throat cancer in December 2013. I chose radiation for treatment and all indications are good, although the process was an ordeal I'd just soon forget. I'm still in very good health despite all that and am active and engaged in life. Many thanks to the folks that keep the YANA site going - my wife and I recommend it regularly.
I am feeling really good, grateful to be cancer free.
So, it's now been 8 years since surgery and I very seldom think about my combative dance with prostate cancer. I can't say enough about the value of this website when I was newly diagnosed. Of the links I see on the website "Don't Panic" and "Surviving" served to set my intentions in the early days. Reaching out to others for support has been my best life-lesson through two bouts with the "C Word" and those connections continue to enrich my later years.
All is well on the health front, no complaints. I seldom think about prostate cancer except when my annual PSA test is done, still worry a bit. Life is good and I am very grateful for my good health at 70 years old. This is 9 years past prostate cancer and that whole ordeal now seems unreal. Many thanks to the folks operating this website!!
Ronnie's e-mail address is: rcassell AT nc.rr.com (replace "AT" with "@")