THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
I was 48 years old taking testosterone (Androgel) daily for being hypogonadal (my testosterone was in the 175-250 range - with the normal range being 350-1000 - or about 500-600 for a guy my age). My endocrinologist told me that my PSA was creeping up. It started around 3.3, then 3.8, then 4.2, 4.6... then shot up to 6.9! I knew something was up. Keep in mind, for a guy my age, my PSA should be below 3... NOT the typical cut-off that you hear so often that is 4.0. This was one of many facts I learned after months of researching Prostate Cancer (PC). I went to a urologist who said I needed a biopsy. I waited a few more blood tests before relenting to the biopsy. To my surprise, the only pain I felt during the biopsy was the needle to numb the area. I had read horror stories about the biopsy procedure, but mine was pain free and over in just a few minutes.
A few days later, my urologist called with the results. Three of the twelve cores came back positive for cancer. One was 50% of the sample, the other two were 10% and 5%. Both cores were involved, but the urologist could not feel anything firm on my prostate during the DRE. I was diagnosed clinically as T1c. Strangely, I took the news matter of factly without too much emotion... which is not the norm for me. I had read that nearly all men develop cancer in their prostate if they live long enough. I was not too concerned at first. However, that would change as I dove into researching the subject intensely. As a science instructor, I am known amongst my friends for my research abilities. I was reading 3-4 hours a day for the first several months. I was surprised at the bewildering number of options for treatment. It became apparent early in my reading, that there was no need to rush into treatment. In this modern era, men of my age are being diagnosed many years earlier than men just 10-15 years ago. With a Gleason grade of 6, the vast majority of men can take their time (several months) before deciding on treatment that is appropriate for their situation.
My urologist told me to stop taking Androgel immediately. He recommended surgery, given my age, to remove the prostate. He suggested that I do it in the next 2-3 months. He said I could wait 6 months or a year, but given my age, I would need treatment eventually... so why wait? My research led me to ask my urologist to send my slides to Bostwick Labs for a second opinion. My doctor said no problem. David Bostwick, a well known pathologist, concurred with the diagnosis. After long contemplation, my three choices were: Active Surveillance, RALP surgery, and Proton Beam Therapy. After several months, it became clear that active surveillance was not for me. Being off the Androgel dropped my testosterone to the level of a 90 year old. No energy, no libido, no recovery from exercise, and no zest for life. I knew I needed to take care of my PC if was ever going to go back on testosterone and feel normal again.
I strongly considered Proton Beam therapy, especially considering that the newest state of the art center opened in La Jolla (CA), not far from my house. As an added bonus, Dr. Carl Rossi, (formerly of Loma Linda Medical Center) was at the new Scripps Proton center and he has treated more PC patients with Protons than any doctor on Earth. I eagerly awaited my appointment. The more I read about surgery and its potential side effects, the more I was willing to join the Proton Beam radiation bandwagon. To my surprise, and to his credit, Dr. Rossi did not paint the glowing picture that I had read and seen from so many "proton" patients. As a person who would need testosterone in the future, Dr. Rossi could not guarantee that the proton radiation would kill all of the cancer cells in the prostate. He also went on to say, that given my young age, I could have issues later in life from the radiation that could effect my bladder, continence, and my rectum. Finally, he stated that the rate of long term erectile dysfunction is about the same for both Proton therapy and surgery. I was stunned. I was so hoping to avoid surgery... especially after having surgery on both hips in the last 3 years. Moreover, after I told Dr. Rossi that I might need to replace both hips in the future, he replied by saying that he would have to point the beam at a different angle to hit the prostate and not effect my hip muscles and related structures.
I went back to my local urologist, who I knew just started doing (da Vinci) robot assisted laparoscopic prostatectomies (RALP). I asked him this question, "If you were diagnosed with prostate cancer, what surgeon would you choose to do YOUR surgery?" His answer was Dr. Chris Kane at UCSD Medical Center. Further research on this doctor led me to conclude that Dr.Kane, was indeed, an expert at this particular surgery. I cannot over-emphasize that when it comes to this type of surgery, the experience of the surgeon is absolutely critical. Dr. Kane had performed over 1000 RALP operations and was chief of urology at a top notch medical school. As a teacher myself, nothing improves your knowledge more on a subject than having to teach the subject yourself to highly intelligent students.
I continued my research. I read every story on this YANA website for men ages 40-49. I noticed that about three quarters of the men chose surgery as their treatment. However, I still waffled between getting the surgery and waiting... until I came across a book that merits mention out of the many that I read: Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. This is a MUST read book on the subject of Prostate Cancer. I picked it up on Amazon for less than $10. In the world of urology, Dr. Walsh is about as well known as you can get... as is Johns Hopkins... the medical institution he has worked at for so long.
Throughout the 590 pages of the book, I picked up some real nuggets of information that made my decision for surgery easier:
- Repeated biopsies (3 or more) can have a negative effect on the outcome of a nerve sparing RALP. (pg. 235)
- PSA density is a critical factor. While my PSA was not too high (6.9 was my highest)... my prostate (based on MRI) was small in size (only 23 cc). PSA "density" should not be above .15. When I divided my highest PSA by my prostate size, it was close to double the recommendation of .15.
- 96% of all men under age 59 (keep in mind I was 48) have a PSA under 4.0.
- About 25% of the time, cancer is upgraded to a higher Gleason score after a pathological examination upon removal of the prostate. (pg. 202)
- Several studies show that 25-50% of all men that go on active surveillance develop progression of cancer within 3-5 years (pg. 204)
- By age 60, men have lost 40% of the nerves in their body. What nerves we do have do not heal as well as we get older. ((pg. 245) Stated another way, younger patients have nerves that heal better.
- Even if a promising new form of treatment were available today, it would take 15 years of data to show that it really worked.
This last statement really resonated with me. As I waited, I thought that maybe a new form of treatment will come along and I will not need surgery. Well... new treatments ARE coming along. The problem is that it takes at least 15 years of data to prove they are better than the "gold" standard of surgery. As a science teacher, I had to make a decision on the best available data at the time... NOW.
I had my surgery 15 days ago on July 14th. I was out of the hospital the next day. I had a catheter in for 8 days. Not as bad as I thought it would be. A hassle, but not really painful... except when the doc pulled it out. Since then, I have not had one drop of urine leakage thus far. Every day and night I check my pad... dry as a bone. Given all of my reading, I know I am lucky. However, I did the Kegel exercises religiously for a month prior to surgery. Not too worried about incontinence, I shifted my focus to getting my first erection. With a little visual and manual stimulation, my first erection came 2 days after the catheter came out... day 10 after surgery... with no Cialis or Viagra. Tried again 4 days later with equal success. I have not attempted sex yet or had orgasm, (a little too sore in the plumbing down there), but I am not too concerned about ED being a problem. Moreover, various doctors state in their literature to wait 3-4 weeks before attempting sex and having an orgasm. Keep in mind, the urethra had to be sewn back together during the operation. I had some blood leakage after straining moderately to pass stool on the toilet, but it has only happened twice. I am eating a high fiber diet and taking two stool softeners a day. It has only been two weeks, but I am already on the road to recovery. I am confident each day will keep getting better.
I see my doctor again next month. I will update my story then. Many thanks to Terry for having this site. This website was HUGE for me in dealing with this crisis in my life. I feel I owe Terry and all of the men that have contributed to this site a big debt of gratitude. Thus, I will continue to update my story and try to help other newly diagnosed men in the future. Bye for now.
Just wanted to update my story. I had RALP surgery July 14th with Dr. Chris Kane at UCSD Medical Center... so it has been just over two months. My first ultra-sensitive PSA test came back at less than .01. Doctor basically said the PSA is undetectable at this point. Great news. What a relief. The pathology showed that half of my prostate was cancer, but the margins were free and my pathological Gleason score was 3+3, just like my clinical score from the biopsy. Finding out that half of my prostate was cancer, at only 49, confirmed that I made the correct decision to have the surgery.
On the side effects front, I could not be more pleased. I feel very normal. I recovered extremely well from the surgery. The first week was tough, like the doctor said it would be... but it seems like a distant memory now. At 6 weeks, I started light exercise and have gradually eased back into things. I have only leaked, more like small squirts, 3 times in the first 6 weeks, but none in the last 3 weeks. Each time this came on when I tried to forcefully pass gas while sitting, just like the doctor said it might. Nonetheless, I stopped wearing a thin pad weeks ago. Never had a drop of leakage at night. The thin pad was no big deal to wear, but I did not see the need.
As far as ED issues, I have none. Had my first erection at 10 days. My first orgasm was at about 5 weeks. Sort of scared that I might cause damage down their from muscle contractions... but no real issues. It did not feel the same or as great as before, but it was pleasureable. Over the course of the next few weeks, the sensation keeps getter better. It still seems odd that the orgasm is completely dry, but I am getting used to it... and enjoying the perk of "no mess sex."
Could not be happier to have gotten the surgery. The key is getting a very experienced surgeon. It has only been two months, but I do not think about cancer any more (well... a little bit, at times) and I have moved on. I realize I am not out of the woods completely, but it makes no sense to worry about it now. I did what I needed to do. I wanted to make sure I gave myself the best chance to be around with my wife and kids into old age. I wish everyone well. Gary
Hello everyone. It has been awhile since my last update, so I wanted to contribute an update to help other men as they have helped me. It has been about 7-8 months since my RALP surgery last July. My last ultra-sensitive PSA test came back at zero (undetectable - below .01). Obviously that is huge. I spoke with my doctor (Chris Kane - UCSD Medical Center) and asked him about my testosterone level. (It is still in the 200s). He said I could go back on it, but cautioned me that there is some risk. He said the risk was small and there is very limited data on this subject. Literally, less than 1000 men have been involved in studies where they had prostate cancer... then went back on testosterone therapy. The limited data suggests that recurrence rates do not go up with testosterone therapy. However, he said something else that was quite interesting. He said, "Would you be kicking yourself if your cancer was to come back after you went back on testosterone... thinking you may have improved your risk by feeding any latent cells?" I have to admit, I thought about this a lot. I AM the kind of person that does not let go of making mistakes or poor decisions. I have a real problem with this. Bad decisions bother me for a long time. Either way, I told the doctor that I could go two more testosterone tests (6 months) to give me some more data. I would be more comfortable making a decision on resuming testosterone have two more "undetectables" under my belt.
As far as side effects, I have had a few come up recently. I had a few episodes where I had a good amount of pain in the prostate area upon orgasm. It felt like a cramping sensation. Some times it happens, some times it does not. Also, I have had some mild pain in the abdominal wall where my incisions have been. The generalized pain in the prostate area has lessened. I can ride a bike now without too much discomfort. Other than that, things have been good. Have not had a drop of leakage. I can achieve and maintain an erection pretty good... and really good with the Cialis or Viagra. I only took Cialis for the first month or so... and I only took a one-third pill of Viagra (which worked really well) on a night about a month ago. I have never been a fan of taking pills, so while it takes a little more work to get things going down there, it is not a big deal either way. Keep in mind that I have a testosterone level lower than my 81 year old father. So I going to have some mild ED issues anyway, with or without surgery. If the ED issues creep in a bit, I will simply take a half Viagra if needed. My thought is that, if and when, I go back on Andro-Gel to get my testosterone up to normal, the mild ED issues I have will go away... and I will not have to take any pills. That's all for now. I updated my email address below. If you have any questions, feel free to email me. I have been a Biology and Anatomy teacher for nearly 30 years and I researched the subject of prostate cancer for a long time. Would love to help any man out there and "pay it forward" as the men (like Terry -RIP) before me did for me. Gary
Just wanted to update my story to help any men in a similar situation. Beyond having prostate cancer and having RALP surgery, my situation is unique in that I was hypogonadal (very low testosterone levels) for years prior to learning I had prostate cancer. (In fact, there is some research that my low levels of testosterone may have contributed to my getting prostate cancer.) Thus, I am part of a small percentage of men that is on testosterone, after having prostate cancer and having my prostate removed with robotic surgery. For decades, this was considered a no-no. However, there has been a shift in opinion on this issue in the last few years. I have been on testosterone for the last year or so. So far, so good. I take a PSA test every 4 months... even though the doctor said I could go every 6 months. Each time, it comes back at zero with the ultra-sensitive test. I won't lie that being on testosterone makes me more uneasy about each PSA test... but as a man of science (literally), I have to evaluate the evidence and make an informed choice. I do not see how getting my testosterone level up to somewhere near normal increases my risk of biochemical recurrence beyond that of a man who naturally has normal levels of testosterone flowing through his body.
As far as general side effects, I have noticed in the last two months that my urine stream has gotten a little weaker at times. I will ask my urologist about this next month. On the plus side, I have very little side effects on the sexual front at this point. Things continued to improve, as the doctor said, to about the 18 month mark. I should point out that getting my testosterone UP to "low" levels has been a key factor in the sexual improvement area.
So that is my update. If there is any man out there that needs help or advice, just email me. I was fortunate to have this site help me through my ordeal, so I would like to pay it back to the next generation. I literally read many thousands of pages of material on this subject for 8 months prior to making a decision to go forth with surgery... which is a good option for some people... but not all people. Bye for now.
Gary's e-mail address is: kali17 AT verizon.net (replace "AT" with "@")
NOTE: Gary has not updated his story for more than 15 months, so you may not receive any response from him.