I was diagnosed with low grade prostate cancer in April 2017, with a Gleason score 6. What led me to be checked initially? I had been having urinary symptoms, specifically decreased stream, increased/frequent nighttime urination, and difficulty starting stream. These symptoms, along with my age and family history, led me to a DRE and PSA test. The DRE showed an enlarged prostate, but no nodules or abnormalities were felt. PSA was elevated at 6.3. Biopsy showed cancer in 5 of the 12 core samples, but the edges were clear. The local urologist met with my wife and I and explained all of the treatment options, none of which sounded good. The urologist recommended surgical removal/robotic assisted prostatectomy, because of the size of my prostate (very large) and because of my age. He told us to go home and take time to think about it and to let him know when a decision had been made. He said I had time to research and make up my mind. My wife and I spent the next few days in shock. We began researching. There was so much to learn! We researched all treatment types and many prostate cancer treatment centers. We also found the support group sites to be very helpful. We now have an appointment on June 7 at Johns Hopkins in Baltimore for a second opinion. We will meet with several disciplines in one day - urology, radiology oncology, etc... will continue to keep everyone posted.
My wife and I are anxiously awaiting my second opinion appointments at Johns Hopkins next week. I have several appointments; one with Dr. Allaf, urologic surgeon, and the second with Dr. Song, Radiation oncologist. The pathology slides have already been sent from our own lab to Johns Hopkins Precision Medicine to get reviewed by hopefully, Dr Epstein. We do have a gut feeling that Dr Allaf will also recommend surgery as his option l. For those of you who chose the surgical option, I would like very much to now how you managed to survive a long distance drive home, post RALP. Baltimore is approximately 5 hours from our home. Thanks in advance for any tips or suggestions you may have!
It's been a while since I last posted. I was diagnosed in spring 2017 with Gleason 6. My urologist recommended robotic prostatectomy. my wife and I did a little research and decided to have a second opinion at Johns Hopkins in June 2017. Hopkins is a great place - one of the best, in my opinion. After much thought and prayer, I decided to go with surgery with Dr. Allaf at Johns Hopkins for several reasons: 1. Seed radiation (brachytherapy) wasn't really a good option for me due to the large size of my prostate. It could potentially make the urinary symptoms worse. 2. I could have chosen external beam therapy, but if, for some reason it did not take care of the cancer, surgery then would not be an option later. 3. I just wanted to get the cancer out; and 4. Dr. Allaf is an excellent surgeon who is very skilled in robotic prostatectomies. 5. Johns Hopkins is very highly regarded in prostate cancer treatment and they do tons of research in this area.
In August 2017, I underwent a robotic prostatectomy, performed by Dr. Allaf. It was nerve-wrecking, to say the least. So many things go through your mind leading up to this surgery! But, according to Dr. Allaf, the surgery was a great success. No complications and everything appeared to be contained. Everything was put back together "nicely". (The pathology re did later confirm it was a Gleason 6 and appeared to have been contained in the prostate - great news!)
I am 5 weeks out from surgery while writing this, and I feel great! (I will say though, that first week after the surgery was more painful than I had imagined, mostly due to the gas they pump into you for the robotic surgery and my bowels being too slow to wake up from the anesthesia. It was pure hell for about the first 4-5 days). After finally getting my bowels to move, everything else began to feel much better. The catheter was really a non-Issue, other than limiting mobility a bit. I was relieved to get that out! My incisions are healing up nicely.
Now, to get to the meat of things, so to speak:
1. Continence - no leakage or incontinence issues whatsoever, not even on the day of catheter removal. I'm at 5 weeks out, urinary stream is strong, and other than having to wait a little longer after urinating for a few dribbles to pass, I've had NO leakage issues! No pads necessary. This was one of my main concerns going into this, but such a relief!
2. Sexual Function - Very good, considering I am only 5 weeks out! The nerves have definitely been spared, thanks to Dr. Allaf!! On the day of catheter removal, my wife and I experimented with this. We didn't expect anything to happen so soon, but wanted to see if there would be any life down there. It took a little stimulating, but there certainly was life and feeling! I would say it was about 75%. Without the use of Viagra or any other drug! We have since tried several times in the last few weeks, with and without the use of Viagra. We have had great luck both ways. Erections have been firm enough for full penetration on 4-5 occasions so far, a couple of times without Viagra. A couple of things to Note: Dry orgasms do happen and really aren't bad; you don't need 100% erection to achieve this; and spontaneous sex just does not happen at the moment. It does take a little bit of manual stimulation to get things going. Once things get going, it has been great for both of us. My wife and I are very pleased with this and are hopeful we can return to spontaneous sex in due time. The nerves still have healing to do, so we will continue to be active. We have not been disappointed yet.
3. One thing I did not mention earlier is that at Hopkins, I did participate in a small clinical trial, which involved injections of Erythropoeitin/EPO (or possibly a placebo). I had 3 injections of this drug or the placebo; the first injection was administered the day before surgery; the second, the day of surgery, and the third, the day after surgery. The purpose of the study or the hypothesis is that the EPO would stimulate new red blood cells, which would provide more oxygen, and therefore faster healing to the area. It is supposed to reduce the sexual side effects. I will not know for approximately 2 years whether or not I got the placebo or the real thing. I have to wonder if I did get the actual EPO and that could be why I am having such early success and so few side effects. I will participate in surveys every 3 months for the next year, with questions involving sexual and urinary function. This seemed like a low risk trial and I felt it was definitely worth doing!
I try to update at the 3 month mark, when I have my first PSA test since surgery. Please don't hesitate to email with any questions!
It's been a little over a year since my treatment. I am still very pleased with my treatment choice of robotic prostatectomy and my surgeon - Dr. Allaf at Johns Hopkins. I firmly believe that his skill and expertise contributed to me having very few side effects. I have no urinary side effects at all - no leakage, never had to wear the first pad or brief. Also, sex is decent. Despite a few small inconveniences, My wife and I are able to enjoy a satisfying sex life. It's about 50/50 having to take medication for ED. Recently, we have been able to have more and more sexual encounters without the use of any medication at all. Life is good. I am cancer free on this day. My quality of life is much better than the gloom and doom we expected, given the circumstances, and I am thankful for that!
It is now several years out, post-surgery. Life is good. I have no urinary side effects to speak of. Sexual function has improved even more since my last post. Sexual function is not quite 100%, but pretty close - probably the best it's going to be. I no longer need Viagra. My wife and I have a good sex life. PSA remains undetectable. We have a lot for which to be thankful!
Sammy's e-mail address is: lambwatson AT hotmail.com (replace "AT" with "@")
