THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2012 SO THERE IS NO UPDATE.
To begin my story, I should start by telling you that I went to my family doctor in November 2009 for an "annual" physical. I had been in an accident in my van where a young girl hit my driver's side after running a stop sign. The girl's car rolled my van onto the side, where it skidded 25 feet, then rolled over 4-5 times before it landed back on the tires, where I managed to brake before I hit a stone pylon 10 feet in front of me. Amazingly, I unstrapped myself, kicked open the passenger door, and crawled out. I didn't have a single scratch on me. The van was totalled. It had the side and back door windows blown out, 3 of the four tires were flat, the windshield was smashed in, and the roof even had a crease which ran front to back along the middle of the roof. That accident occurred on Wednesday, September 30th, and I ended up going to the hospital on Friday night when my neck felt a bit stiff and my shoulder was a little sore. They took me right in and did tons of x-rays. Everything looked good considering what I had been through. I did have a few micro-tears in my shoulder which healed over a two month period but didn't give me too much of a problem other than keeping me from working out with my trainer at the level I was used to. I left the hospital 2 hours later with some meds to help the soreness in my shoulder. I have been going to a chiropractor since then and my lower back is doing pretty good.
The physical was rather matter-of-fact and included a blood test, but no manual check of my prostate. I knew that a PSA was done because of my age and the fact that my Father had prostate cancer.
A few days later, a nurse called from my doctor's office and explained that I had an elevated PSA result and my doctor wanted me to see a urologist. I received a letter from the urologist I was referred to for an appointment on December 14th. I am sure that the delay in the referral was entirely the responsibility of my family doctor. He is one of a dozen or so doctors and the office feels much like factory. None of his staff are particularly friendly or caring. I have decided not to return to him.
My urologist, who cannot be much older than 35 or so was very nice. I started the visit by giving a urine sample and having an intern do a manual exam of my prostate. When I spoke to the urologist, he had explained that my PSA of 3.37 sent to him from my family doctor had elevated from 1.11 three years prior. He said that it was really my option of what to do. I could wait a year and do another PSA and go from there or I could opt for a biopsy. By nature, I am not a gambler. I figured I would go ahead and do the biopsy, get positive results, and feel good about making that decision. I was scheduled for the biopsy the following Monday right before Christmas. I must admit, I was surprised they could get me in so soon.
It's really hard to described the biopsy to someone else. But for me, the biopsy was not a big deal at all. They started by inserting 2% lidocaine jelly and allowed me to lay on my stomach for 10 minutes. The ultrasound probe itself didn't bother me. Even the gun didn't hurt. It was more the sound that was unnerving. It sounds like they were cocking a kid's gun and pulling the trigger - 12 times. The sound made me jump a little each time it went off. I honestly felt no pain.
Before I left, I was told that there might be a little blood in my urine, my semen, and my bowel. I was told not to have any sexual activity for 4 days. No problem. I am gay and single. There was a little blood in my bowel but was gone after a few bowel movements. My urine was only slightly pink in color for twice. I must say that I wish that someone had explained what my semen would look like during my first few ejaculations. The first, on day five, was mostly the result of curiosity. It was a bit shocking. The volume of the ejaculate was about 4 times that of a regular ejaculation and looked like solid blood. I was afraid that I should have waited longer. I was on the internet immediately. I only found one mention that was similar to mine. The next 3 ejaculations was about the same but slightly less in volume. The next 10 or so ejaculations were very pink in color. It was almost 2 weeks and 15 or so ejaculations later before my ejaculations seemed normal. It was a relief.
On January 4th, I was scheduled to return for the results. On that day, I arrived and was asked for another urine sample. Then, my doctor came in and broke the news. I had had 12 samples. Eleven cores came back negative, and one was positive. It was 5% on that one core and had a Gleason score of 3+3=6. He asked if I had any questions and while I did, I couldn't believe that I was mostly just interested in leaving the office. He went over possible options but I really wasn't listening that much. He asked what I thought. I told him that I thought I would have another blood test in 6 months and we could go from there. I left the office very surprised even after knowing I was in a higher risk category due to my results and my Father's cancer.
One week went by and I decided to move the blood test up to 3 months. I will be going back on April 5th for the results of my next blood test. I am still not sure of what I will do at that point. Part of me feels like I should have another biopsy and part of me just wants to go ahead and schedule the robotic surgery and be done with it.
I like my doctor but I am concerned that he has not performed enough of the surgeries to make me feel comfortable. It will be one of the first questions I have for him. There is another doctor in the practice who is ranked in the top ten of robotic surgeries in the United States. He has performed over a thousand prostate surgeries and he posts his results online. He is the director of robotic surgery at Ohio State Medical Center. So, I think I would be in good hands if he turns out to be the doctor I choose for the surgery.
Well, that's where I am at the moment. I will try to post again before my next appointment in April to let you know what I am thinking as I approach my decision.
Later: I just joined YANA a few days ago with my first post. I have been reading the posts of this site ever since I was diagnosed Jan. 4, 2010. It has been a very valuable site to me and extremely informative. It's nice being able to read the perspectives of others dealing with PC.
Part of what I wanted to express during my first post about having a terrible van accident and then finding out that I have PC, is that that accident may very well be responsible for saving my life or at the very least bringing my challenge to attention sooner than later. I remember telling everyone how lucky I felt surviving that accident. If you had seen the pictures of my van, you would understand why. When I saw the van for the first time after my accident a week later, it made me feel physically ill. It also was a very emotional experience. I am actually a very level-headed pragmatic person. I remember crawling out of the van, finding my cell phone on the ground 15 feet from my van, then finding the battery which had come out of the phone and dialing my personal trainer to let him know I wouldn't be able to make my appointment. I remember a witness asking if I was calling the ambulance. I guess I was a little in shock at that moment. I am the type who just faces my situation, whatever it is, and figures out how to face it. After that accident, I found it hard to sleep for months. What made it worse is that I have sleep apnea and so what sleep I did get, was not recuperative. Now, the PC has made me almost forget that I even had that accident. Though I must admit reading articles about PC online, often later in the evening, doesn't help my sleep. I have had to limit the amount of information I can process about PC in one day.
Amazingly, I have already had several people send me emails with suggestions and support since I posted a few days ago. That really made feel like I am not alone. Thanks Guys.
I decided just the other day to move my next PSA test and appointment with my doctor to March 8th. I really didn't take the time to talk to him in January when I first go the diagnosis. Now I have lots of questions for him including a lot about his credentials and experience. I think there is a good chance I will switch to another doctor who does about 2 robotic surgeries a day. He's also one of the top ten robotic surgeons in the United States.
I will send in another update after my next doctor's appt.
Today is March 8th, 2010. I just returned from an office visit with my urologist.
During the visit where I received the news I had cancer (Jan. 4th, 2010), I really didn't take the time to ask many questions. I did another blood test to get an updated PSA last week and it went from 3.37 down to 1.48. I realize that I still have cancerous cells taken from one of my 12 samples during my biopsy in December, but I did find this decrease in PSA curious. My doctor said that it happens. I was just about ready to seriously consider having the robotic surgery until my doctor said that I fall into the category of "over-treated patients." He said that my decision on how to proceed was a personal choice based on the information I had. He said that I have a very low-grade cancer and he didn't think that it necessarily merited surgery yet. He suggested that I return in 5 months for another PSA test (August 2010). After that, he wanted me to return for another biopsy in November 2010. He said that as long as I do not see an change in the Gleason score in the biopsy results, that surgery might be something I might want to consider down the road. He did encourage regular testing.
While I was there, I did ask about his experience and it appears that he has only performed and/or assisted with 40 of the surgeries. I mentioned one of his colleagues who has done over 1,000 and who I suspect gets a lot of referrals. Obviously, he understands that choosing an experienced doctor is important and had no qualms with my asking about the other guy. Of course, by the time I have to have the surgery, he may very well be experienced enough.
Now, I am resting a bit easier with my decision to wait for now. As my doctor said, everyone is most concerned with missing the "window of opportunity." He's right; that's exactly how I feel.
Hello. I decided to do a quick update since my last one. I am still in the "active surveillance (AS)" mode and awaiting my next PSA test in August.
I just wanted to let everyone know that now the issue of PC has sunk in and I have decided on AS, I am at peace with my decision. The first few months were a little stressful thinking about what could happen. Now, I am at peace with my decision and (while I do think about it) it doesn't cause me any loss of sleep.
I sort of feel bad because one of my neighbors where I grew up (he's 4 years older) recently had robotic surgery. My issue is that he had been laid off of work and was on COBRA insurance and opted to have the surgery now because he was afraid that if it got worse anytime soon and the COBRA ran out, he wouldn't be able to afford to pay for surgery. It's just sad to have to make a decision based on such an unfortunate circumstance. On the positive side, he has had a great and quick recovery.
Anyway, to those of you are considering taking some time to reflect (and whose cases are similar to mine in that they do not require immediate action), it's ok.
I just had another PSA test and got the results back August 2nd. My PSA has gone down to 1.21. I guess there is a good feeling that the number is going down. I realize that the goods news in this is not that I don't have PC just that the number isn't rising.
I am scheduled to have my second biopsy December 6th. It is about the one year mark from when I had my first one and got the initial diagnosis of PC. I am now seriously contemplating switching doctors. Mine is a fine young doctor but he had never performed a robotic surgery, only assisted. In the same urology group, is the best doctor in the area. He performs about 10 robotic surgery's a week and has done over 2,000 of them. He posts some of the best results in the country. Part of me wants to have a second opinion and the other part wants to be working with a doctor who has done enough of the surgeries to give firsthand responses to my questions.
I will provide another update after my next biopsy this December.
It has been awhile since I last made an entry.
This past December 2010 marked the one year mark from when I had my first biopsy. I had my second one in early December 2010 and got the results back the week of Christmas. My results this time came back a little worse. The first biopsy was 1 of 12 samples coming back positive at 5%. This time, two came back positive; one at 18% and one at 20%. My Gleason score is still 6.
After much thought and a meeting with a surgeon this past September, I have decided to go ahead with a robotic prostatectomy. I have scheduled it for May 9th. All in all, I have been focusing on the issue too much this past year. I am pretty level-headed and decided I would make a decision depending upon this biopsy. My urologist still believes that I have time before I need to make any decisions, but the surgeon I spoke to, believes that surgery is an investment in my future. I believe the same thing.
Now I am planning on taking a week of vacation in April to do a few odd jobs around the house in preparation for being off in May. I have tentatively planned on taking three weeks of short term disability. I would like to hear from other guys to hear about their feelings on whether this is a typical amount of time to take off from work. I work at a desk and so my job isn't too strenuous.
Mostly, I am going to miss going to the gym and working out with my trainer and the group of people that I have become so close to this past year. They have all been supportive. I ran my first 5K last year with this group and it was a wonderful accomplishment. As it turns out, there is another on the Saturday before my surgery on Monday this May. I would like to run this race with them as it will probably be six weeks or so before I can return to my workouts. I decided to wait until May to have surgery because I do not want to have surgery while the snow is on the ground and I would be trapped in the house. I figured in May, I can relax and at least sit out on the deck in the warm sun while I heal.
I will make more updates as I approach my surgery date.
It has been five weeks since I had my surgery. Surprisingly, it was moved up a week on me and while I would rather have it earlier than later, it was a little bit of a surprise. The day of surgery went very smoothly. I arrived about 30 minutes earlier that I was expected and actually had my prep and surgery about 2o minutes earlier. My surgery lasted 3 hours and I was in recovery about 3 hours. I did receive a more than average amount of pain meds but that was because I managed to get a bruised nerve in my leg. My left leg kept floating outward and off the end of the bed. The nurse kept asking me to move it back onto the bed in recovery and that caused me a lot of pain in my abdomen. I also ended up with the left tip of my tongue being numb from where I had been intubated. That numbness just went away at week four. I still have some soreness in my leg but my doctor assures me that it will go away in time. He told me it was caused by the way that I was positioned during surgery. I didn't realize until after the surgery that my legs from knee to feet were flat on the table, while the rest of my body was pretty much hanging straight down with my head toward the floor. I guess this allows everything to shift away from the area being operated on.
I must admit that, with meds, the pain wasn't bad while I way laying in my bed following surgery. They did get me up to walk that evening. I did sit up by myself and stand but I felt sore. I did not like having the catheter in and walking around. It was my first experience with a catheter and it is the least fun part of the whole ordeal. I went home the second day before noon. I hadn't even looked at my incisions until I went home. They didn't look bad at all but I was surprised at how swollen my stomach was from the gas used to inflate my abdomen. I looked like I had gained abut 30 pounds.
The one thing that I had been told is to walk often in order to get my digestion going and to get rid of the gas. I had the surgery on Monday and my first bowel movement was on Wednesday afternoon. They did suggest that I use stool softeners which definitely helped.
For the first week during the night, I got up out of bed about every 2 hours to empty the urine bag from my catheter and to walk. I hated walking around with the catheter and I was always worried that while I was sleeping, I would roll over and pull on the catheter and not realize it. The one thing that I read I was to do was to apply vaseline on the head of my penis where the catheter went in. I did not realize how important this was. I didn't realize that as my penis expanded and contracted due to the temperature, it would move up and down the catheter. Without the vaseline, when it expanded the first time on a dry catheter, it hurt. I made certain that I applied vaseline often and washed off the catheter where it went into my penis every 4-5 hours to help ward off any infection.
Most of the gas from my stomach went down the first week and the rest of it was gone the second week. Fortunately, since I had the surgery on Monday, I was able to get the catheter out on Friday during my follow up assuming there weren't any issues. On the day of my follow up, I had to lay on a table as they scanned my bladder. Then, they took detached the urine bag and used a funnel to pour dye through the catheter into my bladder. They then checked for leakage. Fortunately, all was well. Then I had to stand up and pee to get rid of the dye and then they filled my bladder again with water. Again, I had to stand to pee to empty my bladder. While I was thrilled to be leaving with the catheter, I felt silly standing in the room with five people while I peed.
They gave me a pad to wear home. I dribbled slowly constantly. Then I had an appointment with my surgeon's nurse who went over vacuum therapy and the use of Viagra.
When I went to bed, I wore a pad, but didn't leak at all that night. I did wear a pad the first week and while I did leak, it wasn't a lot or constant. I have been doing the Kegel exercises and walking regularly the last 4 weeks. Now I wear a small pad but only because I occasionally dribble a few drops if I sneeze or strain to move. The initial pads that I used were too thick and long so I cut them halfway between the top and bottom and just used half of it. Then, my sister, who was helping out, suggested that I might consider buying some women's liners. They worked but were too narrow. So, she sewed two together side by side and then cut them in half. It made them wide enough for full coverage and short enough not to feel uncomfortable.
I started walking outside the seconde week. By the end of the week, I was up to 4 miles. I have consistently walked an average of 2.5 miles a day. I plan on going back to work next Monday which will make a total of 6 weeks I have been off. I am glad that I took the whole time off recommended by my doctor. I found I took lots of naps in the afternoon after my morning walks.
As far as the erectile functioning is going, that has been slow. After the first two weeks, I started taking 50MG of Viagra daily before I go to bed to help increase blood flow. I also have been using a vacuum pump daily which was uncomfortable at first. While the pump works well to create full erections, I still can't get a regular erection. I have taken 100MG of Viagra a few times to see if I could get an erection (when I am aroused) and have not had any success yet. I spoke to my doctor about this and he assures me that it is still very early after my surgery and it can takes some time to heal.
Honestly, my biggest concern was having urinary control. I will continue to work on the erection issue. For now, I am very happy with my results.
I just got back the pathology on my prostate and it was excellent. I had caught the cancer early and it affected only a small portion of the prostate. Also, the results on all 8 lymph nodes came back negative for any sign of cancer. I have to go back for a PSA test in August and my surgeon expects it to be very low given my pathology results.
Doug's e-mail address is: email@example.com
NOTE: Doug has not updated his story for more than 15 months, so you may not receive any response from him.