THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
I am generally a healthy man with a wonderful family. For the past 15 years I have had problems with very low testosterone (under 100, normal male range being between 270-800) related to a pituitary abnormality. As a result I have been on testosterone replacement therapy since my original pituitary diagnosis. With that treatment I have felt pretty good physically.
At the beginning of 2014 I started having some other minor health issues, including difficulty urinating. It seemed like I always felt like I had to go and when I did I really had to strain. It also seemed that I never felt like I completly emptied my bladder. I assumed my prostate was probably enlarged as I knew that was common as men get older.
I finally went to my endocrinologist for my other health issues and he ran a battery of tests to check to make sure my liver and kidneys were functioning. It was simply by chance that included with the tests was my PSA. I had never heard of the PSA and couldn't say if I have ever been tested before. I knew very little about prostate cancer but knew every year I had the uncomfortable probing by my doctor during my physical. I had never had any problems before.
My Endo doctor determined everything was fine from my endocrine system, but referred me to a urologist for the urinary issues. He mentioned my PSA was high. I didn't give it much more thought.
I met with the urologist and upon probing my prostate he said it was perfectly normal size with no bumps. He said my PSA was high for someone my age @ 4.8. He set me up for a biopsy. I considered the whole thing another wild goose chase that would end up with the normal "everything is fine" result. I remember talking to my dad about the biopsy and made some comment like I am sure I am fine and that I had looked up prostate cancer on wiki and if I had it, it was minor and very treatable. Obviously I had no clue what I was talking about. I did the biopsy the following week. It wasn't painful but more of a violating experience. He prescribed me flomax and sent me on my way. The biopsy messed up my erectile function for about a week which was unexpected. And the first time I had sex, I had never seen so much blood..really freaked me out. The flomax fixed my urinary issues and I just got on with life.
About a week later the doc called and wanted to meet with me and suggested I bring my wife. He said I had some cancer in my prostate. I still didn't grasp what it all meant. My wife and I met with him and he explained it all. We were both really in shock so I probably heard every other word. 3 of the 8 samples had cancer, one at 5 percent, one at 20 percent and the other at 40 percent. Somehow they lost two samples on my left side so we're not sure what was there. He said I had a gleason of 3+4=7 at a stage of t1c. He said that if I was a gleason 6 that active surveillance might be a option, but that based on my age and 7 he really recommended I take care of it.
We left that appt deeply scared. It was a few days before Christmas holiday so we decided not to tell anyone including our kids. I wanted to have a plan before we did so and didn't want to ruin the holiday for others. That was the worst..I haven't been in such a dark place as my online research began to give me a sense of the seriousness and potential consequences of what I was dealing with. We had to fake joy for over a week as we both were scared to death of what was ahead.
In the weeks that followed I submersed my self in learning about my cancer, the options I had and the devastating potential outcomes of each. I read about 15 books, met and talked with a few people that had dealt with at, and researched the web including the Yananow site. I met with three different oncologists and one of the best surgeons in California.
Several things began to drive my treatment choice. Over the months I have gone through the emotions of grieving almost daily and have vaselated between what I wanted to do. I have finally become confident of my choice of surgery. Reasons;
1. I would like to be cured 100 percent as I have hopefully many years of life ahead. The cancer appears to be contained well within the prostate so complete removal is attractive.
2. I can't stand lack of clarity. Knowing that they can biopsy it and have good answers after is also attractive.
3. If it recurs I feel more comfortable with the options. It gives me a good backup plan if we don't get it all.
4. I'm young and in good health so my chances of good recovery are better.
5. And probably most important is that if I get it all I can go back on testosterone treatment possibly at some point in the future (as per both oncologist and surgeon). It's a controversial area with no clear answers as far as I can tell. But it's a quality of life issue as me being not treated is nearly equivalent to zero testosterone for the rest of my life. My level came in at 95 without androgel. I'm miserable with many side effects.
I have read a number of things on Yananow regarding low testosterone and its comforting to know I am not the only one in the world dealing with this issue...one that takes an already miserable situation and makes it far worse. That said, I recognize that I am very lucky at this point to have caught it early and have a good chance to treat it effectively.
I am scheduled for my surgery in May. I am terrified about the future, bit think we all likely take things just one day at a time. I am hopeful for a positive outcome but also realistic of my journey ahead. I am so lucky to have such an amazing wife who loves me and supporting me. I am so grateful to everyone on this site who have had the courage to share their story so that a newby like myself can feel not quite so alone. Thank you.
Unfortunately my surgery had to be delayed a month due to some other medical issues. I went into UCSF on June 25th for my surgery with Dr. Carroll. It was fairly smooth and the doctor was thrilled with how it went, saying that they cleanly got the prostate out and spared the nerves. They put in a sling of some type at the same time (hadn't heard of that before, but glad they did). I was in an expected level of pain and stayed in the hospital for one night. The ride home (several hours away) was not a lot of fun as I could not find a comfortable way to lay, but we made it.
For me, the catheter was rough. I had had one earlier with my other medical issues, but this time I was supposed to be mobile and I could not really find a comfortable way to sleep. I had family around me, which was wonderful, but was also challenging emotionally as I just wanted to crawl under a rock. I was in quite a bit of pain and just felt pretty gross in general so really didn't want to be around anyone. I don't remember the exact amount of time, but I believe it was 13 days before they removed the catheter and almost a month before I was able to get back to work. Mostly that was because of incontinence issues, not pain.
My wife had asked me before the surgery if I was ready for the possibility of being incontinent and with out erectile function. I remember looking at her and saying "how do you be ready for something like that?". I was prepared and fully aware of those likelihoods. That said, each had an impact on me that I really can't describe well. Upon removal of the catheter I was immediately incontinent and for the next three weeks I wore a full Depends brief. I was very lucky in that I did not have any problems when sitting or laying down. I could sleep throughout the night and never used the big bed pad I had purchased. Standing up was another thing all together. I had no control. It was like tipping a tea pot, as it just poured out. I am one of those guys that likes to be clean most of the time, often taking multiple showers in a day, so incontinence was awful in that regard. No one really talks about the discomfort, the odor, the feeling of being dirty and the sense of fear and self consciousness when with other people. I am prone to depression and this sent me on a whirl. I believe I am a bit unusual in that regard.
After three weeks I was able to drop down to a large pad three times a day. Going back to work was really interesting as you don't really think about the logistics - how do I bring a new pad into the bathroom (they are big), and what do I do with the old one (we are a very small office)? Well I worked through it and it got a little better over time. It wasn't until about two months that I was able to drop down to a light pad three times a day. At ninety days, I was down to one pad a day with just dribbles throughout the day. I was doing a lot of keagals since the surgery and I kept finding that if I did them too much for a couple of days straight, I would really lose control for the next couple days. I just needed to give the muscles time to recover a bit. I think the hardest part for me about all this stuff is that you just don't know if you will recover...you hope that you will, but there is just no guarantee and that can do a number on your state of mind.
By the fifth month, I was down to one light pad a day that is barely used, but I kept it on for assurance as sometimes I just had a bad day or afternoon. By the sixth month I am 98% continent. I still have to be aware of it and sometimes have minor climacturia.
ED has been pretty devastating. I have always been a pretty sexual person and this has been a very difficult process. No unassisted erections as of the 6th month mark. I take Viagra about 4 times a week and it doesn't seem to have any real effect. I purchased a vacuum pump which I use daily for rehab (which I have read is critical), but have not had good experiences with it for sex. Its just sore and numb and generally really uncomfortable.
At about the third month I started looking into shots. I got a prescription for Caverject, which when injected definitely created a very solid erection. The problem was that I was in excruciating pain and ended up in the ER after 4.5 hours. Not fun. After several (successful) attempts with that, my doctor prescribed bi-mix shots that have to be compounded by a pharmacy. Bi-mix does not have the pain. I prefer the manual shots rather than the auto shots. I just have better control. Finding the right dosage has been somewhat tiring and the whole process is emotionally draining. The shots can be used as much as every other day. Sex can become very medicinal if you don't really work at it, and it has to be planned out with good notice. That said, the shots work well and I have a loving and supportive wife who has been wonderful through this whole thing. I pray for a return of natural function, but I am grateful to be able to still have a sex life until then.
If I had to do this over again, I would do it exactly the same. I took my time and really researched the choices and have no doubt whatsoever that this was the route I needed to take. I have had two PSA tests that are undetectable. My cancer was contained within the prostate, negative margins, no seminal vessal or lymph node extension. The pathology confirmed a Gleason 3+4=7. I have no control over the future or my cancer, but I have a good prospect of cure.
That said, prostate cancer has been devastating to me. I have struggled with depression and am struggling to find my comfort with the new me. I knew of cancer, but I had no idea there was a cancer that could so profoundly impact who I am as a man. It's a hard pill to swallow. But, life happens how it happens and all we can do is take it one day at a time and do the very best we can.
I am extremely grateful for my early diagnosis and that thus far I have arrested the cancer. Time will tell. Now I will just try hard to get on with life and enjoy the time I have been given.
William's e-mail address is: william555566 AT yahoo.com (replace "AT" with "@")
NOTE: William has not updated his story for more than 15 months, so you may not receive any response from him.