Just a little background about me, I'm 49 years old and married to wonderful women named Diane. I've been running marathons for 6 years. I run between 25 to 40 miles per week and lift weights and currently consider myself to be in the best shape that I've ever been in. Seven months ago I quit drinking in October 2007 at the age of 48 years old. I work as an engineer and an attorney, so I'm pretty much a Type A.
At my work, employees are provided medical monitoring as part of an OSHA standard for workers that have a potential to be exposed to chemicals. Because of this program, I have a history of my liver enzymes, cholesterol, PSA, age and weight in a table I created. I have a history of my PSA values since October 2000 when I was 41 years old. Below is a summary of my scores.
Oct. '00 Age 41 PSA 1.8
Dec '02 Age 44 PSA 3.3 (told to see my family doctor)
Sept. '04 Age 45 PSA 3.3 (during a routine physical with my family doctor and a late follow-up from 12/02). Because the PSA had stabilized, my family doctor told me to come back in a year.
February 27, 2008 PSA 6.7 and the DRE was a "concern." On March 3, 2008, my family doctor sent me a letter with the lab results from my physical and ordered me, "You must see" a Urologist. Also, the family doctor order an ultra sound that concluded my prostate was enlarged.
I found a local Urologist that my family doctor had recommended. I got an appointment with the Urologist (late-30's, notable medical school, and found out he's run a marathon, too) for March 20. I brought my table of medical lab results for the past 18 years and the results of the most recent tests. He performed a thorough DRE while I laid on my back with my feet in stirrups (like I had always envisioned a Gyn exam would be). Well he probed, but good, to the point some fluid (I believe pee) came out of my penis at the end of the exam. [Terry: Sounds like Billy Connolly's experience] It wasn't a long exam, but definitely the most thorough one I've been through. It wasn't painful but uncomfortable and I thought he was almost tickling my tonsils with his finger. He said he could feel hardness on the left side of my prostate. He said a biopsy would be appropriate to see if there was prostate cancer because of two factors, the palpable left side during the DRE (Digital Rectal Examination) and the high PSA score of 6.7. He stated he would have recommended a biopsy for either factor. He had me schedule the biopsy with the receptionist since biopsies are routinely performed every other week at his office. A doctor that only performs biopsies comes in every other Monday. I was scheduled for Monday, April 14.
At this point, I started surfing the internet and absorbing all I could about PCa and biopsies. I read the basics from the Wikipedia to the Prostate Cancer Foundation. I read about how many samples are taken during a biopsy and how PCa is staged based on the results. I read and read when I finally found this site. I was anxious as hell and found this site to be the most informative because it was by men who had or were going through the same thing I was going through. I had also resolved to accept the fact that at my age of 49 with a PSA of 6.7 and something palpable on one side of my prostate, I probably had cancer.
The day came for the biopsy and I was in the waiting room with Diane. It was early, crowded and I'm pretty sure I was the first biopsy patient that day. A man in a white jacket started yelling where's Dr. B (my Urologist). The three receptionists just ignored the guy. Finally, Dr. B showed up and they called my name. I already didn't have a good feeling about this white jacket dude. So, he says to me, get on the table onto my left side and slide your underwear down a bit. For some reason this confounded me - so do I pull my pants down, too, or just my underwear and does he want me to pull them down to my ankles?? Already not good table manners. I finally figure out he wants me on the table on my left side with my pants and under wear just partially down below my butt.
Next, he shows me this thing that looks like a dildo with electric wires attached to it and an unrolled prophylactic loosely hanging over the dildo-type thing (the "Probe"). My Urologist then enters the room and explains, "First he will insert the lubricated Probe that is an ultra sound probe to survey the prostate. Then he will position the probe that has a retractable needle attached to take a sample and I will hear a sound like this - he squeezes a stapler. He warned me that I would probably not feel much pain but would be startled. Next, white jacket dude slowly shoves the probe up my ass. I thought my eye-balls where going to pop out of their sockets. I thought a DRE was uncomfortable but this was more than my butt - enough of that. So, then he stops moving the probe and says ready (stapler noise).
The best way to describe the pain to me was a light kick in the balls, but at a different location. I could see my Urologist taking each sample and labeling it. I found it very uncomfortable and when the white jacket dude said "just five more." I was thinking please, let this end. It probably only took less than 10-12 minutes, but it seemed much longer. When he finished taking the last sample Dr. B felt compelled to apologize, which I actually appreciated. I felt that I was definitely violated. White jacket dude wiped my butt a bit. I pulled up my pants slowly and was asked to sit up. They asked whether I was queasy and without a beat I sauntered slowly to the waiting room to meet my wife and continued home.
Before the procedure, I had asked my doctor whether I should have someone drive me home and he said I wouldn't need to. I suggest that you definitely have someone drive you home and take the rest of the day off from work. Don't be a martyr! I run marathons and don't mind pain. If you do, discuss with your Dr. your need for something for the procedure. I wasn't given the option.
I was uncomfortable the rest of the day and felt a little better after a nap. I never peed blood or saw any blood in my stool. I actually decided that white jacket dude might have had a poor bedside manner but was very good at his job. (I'm sure there's a crude joke that could be inserted here). But I definitely had blood in my ejaculate. The first was like pure blood and it slowly got lighter and lighter with each one. By the way, I spared my wife the mess. What a martyr. The discoloring lasted for a couple of weeks.
Four days later on Thursday, April 17, I had an appointment with Dr. B to discuss the results. I took my wife and was prepared for the worst and already had researched the treatment alternatives. I pity any doctor and the receiver of the bad news. Dr. B was quite direct and said the biopsy test were positive for PCa. He staged my cancer a T2b with a Gleason Score of 6. My wife was taking notes and I asked a lot of questions. Overall, Dr. B recommended a prostatectomy but reviewed the other options. From my own research I agreed with him and was most interested in the da Vinci robotic laparoscopic surgery. I got this news four days before I planned on running the Boston Marathon. I asked Dr. B whether I should run. He replied that I should and wished me good luck. At this point I had been sober now for six months and planned to continue to stay that way despite the bad news.
I again hit the internet for more information about the robotic surgery. I even watched a recorded televised operation from a web site. Instead of creating anxiety, it seemed to relax me. I felt empowered with information instead of fearing the unknown (a bit corny but true).
I live near Boston which has great medical resources and Dr. B gave me names of doctors that performed laparoscopic surgery and robotic laparoscopic surgery. I had already researched the large hospitals in Boston and had the name of a couple surgeons. The next day, I called the doctor's office of one of the most prestigious hospital, Mass General Hospital. The doctor couldn't see me until July 8th. Hello, I have cancer and want to talk to someone. I tried to get in touch with another doctor from Brigham and Women's Hospital whose staff only has voice mail. Guess what, I played phone tag for 6 days. Finally, the receptionist stated, this doctor doesn't perform that (robotic) procedure anyways in a voice message back to me. What a way to communicate.
Then I called a doctor from B.U. Medical Center (a.k.a. Boston Medical Center or BMC). I got a cordial receptionist, Lan (pronounced Lawn) that asked me if I wanted to see the doctor the following Tuesday, April 22, first thing in the morning (the day after the marathon). I already like these people. I found out later that BMC was the first hospital in Boston to get a da Vinci Robotic machine about five years ago for the purpose of performing prostatectomies. I met with Dr. Wang (pronounced Wong) who had performed over 250 robotic prostatectomies. He said the next available date would be during the second week in June. The hospital has a policy to look at the slides from the original biopsy to confirm the results. I personally picked up the slides from the lab in a suburb of Boston and delivered the slide to Dr. Bs office that Thursday, April 24. Dr. B has informed me the hospital's labs agreed with the results.
I just got a pre-op notification in the mail. I have a pre-op meeting for pre-test on May 29, 2008 and will be operated on early Monday morning, June 9. Now, if the wait won't kill me ……
This update is exactly two weeks and one day out from LR Surgery that was performed at Boston Medical Center on June 9th. I've edited e-mails from a couple Yananow Mentors that I have been corresponding with to tell my story. I've tried to keep a good chronology of events to reflect my mental and physical shape along the way. The main events are as followed:
May 29, Pre-operation Appointment
June 9, LR Surgery
June 19, Post-operation Appointment
My story continues: Wednesday, May 21, 2008 9:26:00 AM
I'm definitely a little anxious waiting for surgery. Although most of the posts and sites don't talk about an orgasm post-surgery, I'm the most curious about this and incontinence since these seems to be the most life-style type changes. A mentor from Yananow - Glen Leslie - was the most blunt and informative post for this subject. He even emailed me back that it is better after surgery. My doctor confirmed a dry orgasm, which has some benefits: no mess.
My running friends from the gym joke that I'll be lighter with the prostate removed. Not really that much of a benefit if you ask me. Psychologically, I feel better. I ran the Boston Marathon and didn't do as well as expected. Looking back I wasn't surprised since it was a week after the biopsy and 4 days after learning I had PCa. Last Sunday, I ran another marathon at Sugarloaf in ME and did a good enough time so I've pre-qualified to run Boston next year. That is my goal: to run Boston in '09 without side effects from the surgery. That and to continue a healthy sex life with my wife. June 9th is just around the corner for my surgery.
Tuesday, May 27, 2008 12:43 PM
I work for large federal agency in Boston. Only my boss at work knows what surgery I'm going in for June 9th. I'm trying to avoid being the topic of discussion in an organization that thrives on gossip. It only takes seconds for "news" to get around in an organization of 800 people.
However, I talk to everyone else and try to get the message out to anyone who will listen -- guy's at the gym, friends and total strangers. I believe as others post on Yananow that men should get tested early. Reading my previous post you can see the history of the disease by way of PSA tests. A doctor should be willing to recommend the test just to obtain a "baseline."
I believe that being younger (Less than 50 y.o.) poses different issues for men than men that are diagnosed later in life (>60+). Hey, I'm very physically active and enjoy having sex. I feel like I don't deserve to be sexually inactive at this age. I also believe a young person's prognosis is better -- less likely to have long term urinary control (UC) and erectile dysfunction (ED) issues.
As far as the wait, I'm going nuts. I don't concentrate well, very forgetful and a little quick tempered. However, I do have a lot of support from men at Alcoholics Anonymous. I've only been sober 7 ½ months after 34 years of "controlled" drinking. Okay, so I'll never be President. I've met quite a few men that have dealt with PCa in AA since being diagnosed. I was an atheist when I first decided to sober up and I've been working on my spirituality since. This has helped me deal with PCa. If I was still drinking, I'd be a mess.
I think I've found some avenues to expend all my nervous energy. Working full-time, working-out every day, going to AA meetings and doing some of those house projects I've been avoiding has helped keep me and my chaotic mind busy.
My doctor wants me to take 4 weeks off and I just gave my boss the letter signed by him. I might not need all that time off, but I have the sick leave and maybe I'll even get to enjoy a little of the time, too.
Friday, May 30, 2008
I just had my pre-op appointment yesterday. It was little intimidating with all the information I was given. BMC is a learning hospital for Boston University. So, a young male intern came in to discuss what to expect on the morning of the operation (get there early, get undressed, meet with the Dr. and the Anesthesiologists, given a relaxation drug and off to the operating room. My wife would be called after the operation was complete and I was headed to a room for the night. He also explained that once the JP drain is removed and I am walking around, I would be sent home which usually is the next day. He said I would be sent home with a catheter. Today a physician assistant would come in to explain catheter care. Before I left, I would be sent upstairs to be monitored for anesthesia which includes vitals, blood work, and possible EKG. He asked if I had any questions. I explained that the one time I was under anesthesia I was very ill (lots of vomiting). I also ask ed for a prescription for my pain medication, so I would have it at home after the operation. He wrote the prescription for me.
The young female physician assistant came in and explained the care for the day catheter and the night catheter. When she asked whether I had any questions, I told her about shaving the upper leg so I could tape the drain to my leg without pulling all the hair out every time I changed from my day catheter to my night catheter. I also explained about putting a coat hanger with the hook hanging out to hang the large night catheter when sleeping. She asked where I learned these tricks and I told her at Yananow. She now lurks there to learn other men's tricks of dealing with a catheter. Bacitracin ointment on the tip of your penis where the catheter comes out is a great sanitary trick to avoid pain from catheter movement.
When I went upstairs my vitals were taken (temperature and blood pressure). They also took an EKG of my heart because I have an enlarged heart from running marathons which causes some of the EKG curves to be high. We discussed the drugs I was taking and not suppose to take for a week before surgery like Aspirin, Fish Oil, Vitamin E, and any other blood thinning. They also asked me about any allergies. After blood was drawn I went home for the day.
The next two weekends were spent cleaning out a garage. Not fun, but man did it keep me busy and tired so I could "anx" too much.
Monday, June 9
I woke up at 4:30 am after a weekend of not really eating. I've experience full liquids on Saturday and clear liquids on Sunday. I'm an active person, so these food groups just didn't keep me happy. Now I've just survived a night with nothing to eat or drink. My attitude is becoming: Operate so I can start eating again!
My wife dropped me at the door of the hospital at 6:00 am. I gave her a big kiss and she felt guilty leaving me behind. I was happy she left me there and went to work because there was nothing for her to do. She wouldn't have seen me until I got to my overnight hospital room at about 2pm. I was ½ hour early and she could have sat with me for about 20 min. before we would have been separated. I checked in and was seated in a waiting room with all the other lucky people to be operated on that day and their families. At about 6:25 a woman called out the operationee's names and the families were told to follow. The group's next stop was the 2nd floor where all the families were dropped off at a waiting room.
Up to the 6th floor we went to the pre-op prep room. I don't know why, but I was the only one with a private room in an otherwise open room. Thanks to the Magnesium Citrate I drank the day before I still had the urge to poop and had to ask twice to go to the bathroom while they prepared me. The nurse put in the two IVs and had a drip started, which I lugged to the bathroom for the last trip. In fact all the Dr's Interns were waiting for my return on the last trip. Yes, there were four Interns waiting to see the victim (I mean patient). They asked if I had any questions and told me the Dr. would come by before the operation. I tried without much success to find some humor in all of this. The Anesthesiologist came by and I told him I had been ill the last time I went under. He put a patch with meds behind my ear. Dr. Wang came by and tried to be supportive. Then all the Interns and Anesthesiologist came by and said, "Okay this is it." and I don't remember anything until I woke up in my hospital room at about 2:30pm. My wife showed up soon after and she said the Dr. called her after the operation and told her the operation went very well. He told her that I'd be in my room by about 2:30.
I was definitely loopy but insisted on getting my cellphone from my wife (bad mistake). By 5 pm I was told I could have a liquid dinner. I drank/ate everything: Jello, cranberry juice, broth, tea and lots of water (another mistake). I then insisted to walking the halls to make sure I showed them I was going to get out of this place as soon as possible (about 5:30 pm). Dr. Wang came by and said the surgery was "text book." Everything went well and was done in 2 hours (that's all I remember). My wife hung around until about 7 pm and I napped some. Pain killer drugs every four hours was the rule and I never felt uncomfortable when following that rule (2 Percossets).
I proceeded to call some friends and my boss with my cellphone. I left messages for some and got to speak to others directly. Don't do it. Plan on your wife, relative or someone else to call people you feel need to know. I had to call all of them back a few days later and apologize for my incoherent calls. Some of them were pretty "concerned."
At about 10 pm I asked to walk again and felt a lot better then my first effort. I then coasted to sleep. At about 3 am (Tuesday) I woke up feeling a little nauseous. I thought the wave would disappear - I was wrong. I grabbed one of those buckets and pressed the nurse's buzzer. As I felt every stitch in my body was about to explode, an annoyed voice comes on the intercom saying, "Yes Mr. Call, can I help you. Mr. Call, please respond!"- as I yacked as loud as I could. A nurse came running in and shot my IV with something that allowed me to go back to sleep. All I remember is the putrid smell of cranberries mixed with tea - don't over eat on your first meal - take it easy even if it is only liquids.
The next day I felt pretty good and wanted to walk. Interns came by and asked how I felt and said I would be released if I could walk. I told them I had already walked twice and was ready for another. They said the nurse would review the catheter care information with me and they would be back to remove the JP drain. The nurse's assistant (a very attractive young lady) insisted I give myself a sponge bath in the bathroom before going for a walk and dressing. I found out she was graduating from nursing school in the next few days. After confiding in her that I was a recently recovering alcoholic, she told me how her alcoholic and drug addicted father had given her mother AIDs and she was now an orphan. I'd bet on her success, a wonderful person.
Before I could get my walk in, the Interns reappeared and removed the JP drain from my gut. It didn't really hurt but felt very strange. It was odd to feel something move through your gut - almost a nauseous feeling. I had called my wife and asked her to meet me at the front door at 1:30. She shot across town from work and was there a little early. I got the call after my walk, packed up the few things I acquired and the nurse's assistant called for a wheelchair for my exit. The wheelchair was late and my wife was waiting, so the nurse's assistant walked me to the exit. En route we found our own wheelchair and off I went.
I only live about 27 miles from Boston so the ride wasn't bad. A pillow under my butt would have helped. The best part was a chocolate shake from Micky Dees. The rest of the day was just resting, taking drugs, drinking water, emptying the catheter, and some eating. Getting up hurt and leaning to a side helped when getting out of a bed. The gas wasn't too bad. My first night was pretty restful.
Wednesday, June 11, 2008
The next day was the same as the previous day. It was great to have my wife at home to help with some of the normal things in life like preparing food and getting things. But I still tried to walk around the yard every few hours. The catheter was annoying but I developed a routine of cleaning the catheter tube near my penis with an alcohol wipe. Crusty stuff seemed to form on the catheter tube from the healing process. The crust stuff was very painful when my penis slid a little up or down the tube. I then applied Bacitracin between the tube of the catheter and the tip of my penis. It was a great relief to have a little lubrication in there when the tube moved a little (like when you walk). I also kept the Bacitracin next to the bed because I was lucky enough to wake up with a nocturnal semi-woody. It didn't last long with the pain of that crusty stuff on the tube.
Later that night I had my first BM without too much straining. The laxatives help. It was the first time I experienced pee coming out between the catheter and the urethra from the tip of the penis. This happened every time I had a BM and was caused by bladder spasms at the end of a BM. I tried to relax, and would then stand up, clean the tube and apply more Bacitracin.
That night I developed a pain in my right shoulder that kept me from sleeping regardless of the pain killers. I started to think someone dropped me off the operating table. However, the next night it moved to another location in my right shoulder. My Dr. said at my catheter removal appointment that shoulder pain can be caused by the nerves near the operation site. He said that complaint was common. Anyone else experience this?
Thursday June 12, 2008
Thursday was a very similar day as Wednesday except I was on my own. I showered in the morning even with the steri-strips on my incisions. On the JP tube incision I had a gauze pad covered by the clear plastic bandage (Tegaderm) from the hospital, which I changed after each morning shower until Friday. On Friday I kept the cover off including during the shower. I showered when I first got up every morning and before I changed from my night catheter to my day catheter. That way I could hook the bag on a low shelf in the shower and take off the straps during the shower to clean all the essential body parts. Of course I was very carefully not to pull the catheter accidentally. I also started decreasing the amount of pain killers. Instead of taking two every 4 hours, I took two every 6 hours.
After showering and changing my catheter bag to the day bag (about an hour and a half process), I ventured about a half mile to a breakfast joint downtown. I wasn't very comfortable sitting on a hard chair, but it was great to get out. Walking was a little painful because of the rubbing of the tip of my penis at the catheter from the rubbing of the fabric from my underwear. I discovered snugger underwear helped stabilize the movement. I took an hour nap when I got back from the walk and later another hour nap in the mid-afternoon. Rest feels great.
Friday, June 13
I'm on day 4 and feel good. I'm now only on Tylenol and the once a day anti-spasm med. No more stool softener neither. I'm finally getting use to the catheter, but I still get urine by-pass with a BM. I walk downtown, which is about a half mile away, a couple times today and even met a friend for breakfast. Sitting is uncomfortable on hard surfaces ... I usually sit on one cheek or the other.
On the ED front I've had a couple morning mild erections which doesn't last long with the pain created from the catheter. My Dr. didn't take any lymph nodes and wants to wait for the pathology before stating what the prognosis is ... keeps quoting the 1% thing and stated it was the Urology Department's policy not to take lymph nodes since they almost never come back positive with men with similar PSA levels and Gleason scores. It's also the Urology Department's policy to wait 10 to 14 days before taking out the catheter. My appointment for the catheter extraction and pathology report is Thursday, June 19th and it can't come soon enough.
Monday, June 16
It's been a week. I'm doing well but I'm really sick of the catheter. I woke up with the pain of a nocturnal semi-woody. Surely didn't last long ... man, that catheter can hurt. Bacitracin Ointment helps. I'm thinking ED might not be much of an issue, but time will tell. From what others say, the catheter is just a blip in the road to recovery but it sucks. Otherwise, I'm healthy and fairly mobile. I take walks and nap (although the naps seem to be less often and less needed).
Tuesday, June 17
The strips on my incisions (a total of five small) are falling off. My bellybutton looks like a butcher went wild. One of my questions to the Dr. on Thursday will be "what happened there?" When I watched the operation on the internet, I learned they bring the prostate through the incision at the bellybutton. I'm wondering if the prostate was bigger than expected & they tore the skin when they pulled it out.
My wife & I are headed to our cabin in Maine for the last week of my recovery (the week of the 4th of July) unless Dr. has other plans/appointments. I'm also taking the following next week off for vacation. That'll give me 5 weeks for recovery time. Something I've never done & hopefully never HAVE to do again. I'm hoping by July 14th on my return to have full UC and I'm back to my athletic regiment of running & weight lifting. It might be too much to ask for but it is a goal.
Wednesday, June 18
Well it's less than 24 hours before the catheter gets pulled. I'm more aware of the catheter then concern with the pathology report. I know the pathology report has the possibility of affecting the rest of my life, but I just won't this thing out of me. It's beautiful here so I'm going to try to enjoy the day with a couple walks.
Thursday, June 19
I'm finally catheter free! My pathology report is the tumor was organ confined. Surgical margins were negative for the tumor. The tumor occupied 25% of the total gland. However, my Gleason score was upgraded from 6 to 7 and the staging from T2b to T2c. Overall, it looks like they got it all and I should be cancer free. Next appointment is July 22 for my first PSA. My wife said that she feels like we've dodged the bullet. I can only imagine what would have happened if I didn't go see my Dr. for a physical in February ...
Just before today's appointment I passed a long blood clot into my catheter and it was still a little bloody pre and post catheter removal. Dr. didn't seem too concerned especially when no leakage at the surgery site was seen by the x-ray. I was able to stop mid-stream upon my Dr. request while vacating the fluid from the leakage test. This made the Dr. happy (me, too ... I guess). I'm definitely leaking and with some blood, but I've peed twice like a normal human male!
When the physician assistant with drew the catheter there was a stinging sensation that lasted for about 3 seconds. The urethra continued to sting but at an immediate lesser level. The very slight stinging lasted for a couple days.
I'm pretty happy with the pathology report and look forward to working on the ED & UC things.
Friday, June 20
I had a good night. No real leakage but one time when I got up to pee. I had to get up to pee every 1-1/2 to 2 hours and I was in some pain & found it difficult to start the stream (the valve seemed stuck closed). I found the morning woody a little painful, too. It felt like I still had the catheter in. Yesterday I went through quite a few pads. As a whole for my first day without the catheter I think I'm doing well. On the way home yesterday we stopped by the pharmacy and the prescription for Cialis was $90 for 6 pills (no subsidy from my Blue Cross/Blue Shield insurance plan. Fortunately my diagnosing Dr. gave me some free samples of Levitra and my current Dr. gave me some Cialis. I'll be calling the insurance to see if there is an exemption for men that have a prostatectomy.
As far as UC the following information from my Dr, seemed useful. "Problems with urinary control are common once the catheter is removed. It is normal to experience leaking at first. Do not become discourage.
Urinary control may return in 3 phases:
Phase 1: You are dry when lying down at night.
Phase 2: You have periods of good urinary control in the morning.
Phase 3: Urinary control lasts for longer periods and later into the afternoon and evening."
Go, Kegel, go.
Saturday, June 21, 2008
I forgot about the swelling affect from the catheter that can help with UC for a couple of days. I don't seem to have much control right now, but I still get a stream going every hour or so when drinking fluids during the day. Last night, I seemed dry except when I got up to pee (that get up release).
I'm a bit concerned about tonight ... I'm going to a concert in Boston. Something I planned pre-diagnosis. I can either bring lots of pads, which I'll need for that time of day or wear a condom catheter. I told the doctor about this idea of a condom catheter when the Foley catheter was taken out and he said he hates them and not to use it. So I think the doctor's going to win. I'm bringing a blow up donut to sit on, too.
Monday, June 23
Saturday at the concert was quite an adventure (two days after the catheter extraction and 12 days since surgery). I met up with a friend and took the train into Boston at 3:00 pm. Sitting quietly wasn't much of a problem but I was already leaking and changing pads before I left. When we arrived in the city, we still had to cross the city to the venue for the concert. Normally, you can catch a cab outside of the train station but there were all sorts of events going on in the city and all the cabs were full.
So we started walking the mile and a half with a back pack. About half way there we finally flagged down an empty cab and met another friend of mine that had parked right next to the entrance to the venue. I changed my pad in friends truck and we went out to eat at a nearby restaurant. I had stopped drinking anything before leaving but was still leaking whenever getting up or speaking up. I had about three trips to the bathroom at the restaurant.
I went into the venue at about 5:30 and Levon Helms from "The Band" was already playing. Phil Lesh came out at about 7:10. I continually leaked off and on and changed my pad about three times. The bathrooms got grosser and grosser as the night went on including clogged toilets and puked soaked rims. Fortunately I learned how to change the pads standing up in the stalls and didn't have to touch anything. It was a pain getting up to pee every 45 min or less to avoid soaking the pads any faster. The show was fun but my UC didn't allow for too much relaxation. I stood most of the time, but sat for a rest once in a while. I forgot my blow up donut seat pad that I had left in my friend's truck. When I sat, I usually sat on one cheek and switched cheeks every so often. I got home at about mid-night and was pretty spent.
Sunday I planned nothing and needed the rest. Sunday was totally different. I wore one pad all day but was very passive all day. Saturday's adventure was too much, too early. It was a wake up call that I need to be more careful and to take it easy.
On the ED front I definitely don't get good & hard. But I had my first dry orgasm and found it satisfying. No ED drugs yet but I'll try soon to see if firmness is better. I've got some Levitra and Cialis from my Dr. as free samples.
Tuesday, June 24
During my morning BM, I had a blood clot come out in my urine and caused blood urine for about an hour. Since my Dr. wasn't concerned when I passed a blood clot during the catheter removal, I wasn't too concerned. However, I have lost a lot of UC after passing the blood clot. Later when resting I seemed to regain good UC. I'm doing my Kegel exercises about 3 to four times a day. I try to perform the exercises early in the day when I usually have better UC.
I tried a 20 mg Levitra today and had a good stiffy and my second dry orgasm. Things are looking up.
That's it for now and I'll try to report in again after my PSA results return from my July 22 appointment.
Best wishes to all
Later:
This update is being typed on Friday, July 25, 2008, four days after my 6 week post surgery PSA test and Dr's appointment. My results came back as undetectable (the secretary said 0, but as an engineer I know that can't be true; probably below the detection limit of the lab test). I'm thrilled and hoping to get back to the same level of activity as pre-PCa. Below is summary of my weekly progress since two weeks after surgery.
Third Week Post Surgery (June 23 - 29, 2008)
Some background: At the catheter removal appointment I had asked the Dr. what activities I could pursue and how quickly. The questions were swimming (yes), sex (yes), and then I asked about running. As the Dr. hesitated, my wife was in the background waving her arms and shaking her head no. Well, the Dr. responded that walking was okay, but why don't I hold off until 4 weeks for the running. I took this to mean, run if you feel okay when you do it.
This week, I started to do some hiking on trails through a state forest in my town. I know the trails very well since I do a lot of my long runs for marathon training and cross-country skiing in the winter there. I did 3 Miles (M) walking on Tuesday (6/24/08), 5 M walking on Wednesday and 5 M on Thursday. On Friday I drove 5 hours to our cabin in Maine for a two week get away. Sitting is less uncomfortable then just a week ago. The trip included frequent bathroom stops. I rested on Saturday and hiked 4 M on the logging roads on Sunday. On Sunday I also swam in the lake a quarter M and installed a new small window in the cabin.
Activity Summary (Week 3)
Mon. - Rest
Tues. - 3 M Walk
Wed. - 5M Walk
Thur. - 5 M Fast Walk
Fri. - Drive/Rest
Sat. - Rest
Sun. - 4M Fast Walk, 0.25M Swim
I had almost no urinary control (UC) while walking this week. Any straining or bending down caused loss of UC, too. Again, when sitting or laying down I had good UC and used the bathroom often. As the day wore on I got less UC as I got tired. When sleeping at night I had great UC except when getting up to pee and backing up to the toilet (sitting so I didn't have to aim while half asleep). I got up about 3 times per night to pee. I wore a pad all night especially for the bathroom trips.
One time at the end of the week I tried 20 mg of Cialis for sex and had frustrating results (not hard enough for penetration). During self manipulation I had about 30-40 percent hardness for my erections but was able to achieve an orgasm.
Fourth Week Post Surgery (June 30 - July 6, 2008)
I started running on Tuesday (3 weeks and 1 day from surgery; so much for Dr''s orders). I met up with friends at Acadia National Park (APN) to run on the carriage trails, which have packed crushed-rock surfaces. Otherwise during the week, I ran on the gravel logging roads by the cabin. My bladder became dry & UC was non-existent during my runs. I carried and sometimes changed my pad half-way through a walk or run. I had good UC when swimming, but I could feel the incisions in my gut and felt as though my stomach muscles were weak.
Activity Summary (Week 4)
Mon. - 6M Walk
Tues. - 0.4 M Walk, 4 M Run (ANP)
Wed. - 4M Run
Thur. - 1.5 M Walk and 1.5 M Run
Fri. - July 4 3K Road Race (7:48 per mile pace) +1.2 M cool down, Total 3M
Sat. - 0.25 M swim Sun. - 6M Run (ANP)
TOTAL Running 18.5M
Overall during the week, I had good UC in the morning except when running and had better UC in the afternoon this week. I started to sleep with a small absorbent sheet under mid-section in case of an accident (without wearing a pad). I used a paper towel, which I kept on my night stand, to be sure I didn't wet anything en route to the toilet in the middle of the night.
I tried 30 Mg Levitra and didn't have any success with sex. Self manipulation was the same as he previous week with maybe a slight increase of 40 to 50% hardness for my erections.
Fifth Week Post Surgery (July 7 - 13, 2008)
I continued to run and increase my mileage. Still no UC during runs but filled the pads slower. I had better control walking around during the day. Maine had some beautiful weather, so I was able to stay active and enjoy it.
Activity Summary (Week 5)
Mon. - Rest
Tues. - 6 M Run ANP, 0.25 Swim
Wed. - 0.5 M Swim
Thur. - 6 M Run ANP, 0.25 Swim
Fri. - 5 hour drive back to Boston area
Sat. - Rest
Sun. - 9M Run, 0.25 M Swim and Stretching TOTAL Running 21 M
My UC this week seemed better and I only used one pad during the runs. My UC was good until the evenings as I got tired and I still slept on an absorbent small sheet with no accidents. So I was using 1 pad during a run and about two pads during the day (sometimes only one or on a bad day three pads).
My ED was about the same as the previous week and I tried 30 mg of Cialis with no better luck for sex.
Sixth Week Post Surgery (July 14 - 20, 2008)
My five weeks of leave from work were up. This was my first week back to work. I tried to keep to my usual routine during a work day, which includes getting to work at 6:30 am and going to the gym for an hour. I love to run - and run. However, I was finding each run hard and slow. Well this started changing this week beginning with my Wednesday run with my running partner, Mike. During the work week I run along the Charles River in Boston. I also started to lift weights and doing light abs. Because I was very tired each evening, I decided to take Friday and the following Monday off from work and to head back to Maine for some rest (and running).
Activity Summary (Week 6)
Mon. - 20 Minutes on the elliptical machine & weight lifting bis, tris & chest (4 exercises for each muscle group and 3 sets of 12 reps). Light weights to start.
Tues. - 5.5 M Run, stretches (about 10 minute routine) and some light abs.
Wed. - 5.5 M Run
Thur. - Lifting back, shoulders, light abs, and quads
Fri. - 5 hour drive to cabin in Maine, 0.5 M Swim
Sat. - 4 M Run, 1M Swim, Stretches
Sun. - 11M Run ANP, 0.5 M Swim, Yoga
My UC seemed much better but still used one pad during the runs. During my long run on Sunday I was able to hold my urine for the first two miles when I stopped to pee. After I peed, I lost UC. It seems that when I have built up some urine in the bladder, the valve is more locked closed. I only used one pad the rest of the day with UC problems starting about 4 pm. I stopped using the small absorbent sheet under my mid section during the night, but still had paper towels for the two trips to the bathroom at night.
My ED seemed to be just a little better with about a 50 to 60% hardness to my erections. I am still unable to achieve penetration even with 30 mg of Levitra.
Sixth Week Post Surgery (July 21 - 25, 2008)
Monday, July 21
We drove back to our home near Boston from Maine, so it was a rest day. The pit stops coming back didn't seem very urgent. I wore one pad all day and started to have UC problems when unloading the truck.
Tuesday, July 22
Today is my appointment with my Dr. to review my recovery and to get my first PSA test after the surgery. First, I came into Boston and went to the gym. I ran 4 M and then did my bis, tris, and chest lifting routine. Then it was off to my Dr's 9:30 am appointment. After an hour wait, I saw my Dr. He was happy to hear about my progress for my UC. He seemed a little concerned about my ED progress with only obtaining 50 to 60% hardness to my erections. He suggested I make an appointment with the Sexual Health Institute down the hall. He said that the sex Dr. could help me with a penis vacuum device (PVD) and teach me to use injected ED drugs. He also, said that I should try to stay as sexually active as possible and to take the ED medicines to keep the blood flowing and working the muscles as much as possible - looking forward to that challenge.
I went down the hall and made an appointment to see the sex doctor and was told I was going to also meet with a sex psychologist. I think if things get better on the ED front, this appointment will be cancelled. I then went down stairs and got my blood drawn. I went back to my Dr''s secretary and made an appointment in 3 months (October 28) and got a couple more free samples of Cialis (3 x 30 mg tablets per sample). I was back to work about 11:30 am.
At 5:30 pm I got a call at home from my Dr's secretary saying my PSA was zero. I was shocked to find out so quickly. I love the Boston Medical Center. I really feel like I've dodge the bullet. My spirits are really high.
Wednesday, July 23
I ran 5.5 M today and still had UC problems during the run. I only used one pad during the day with very little leakage occurring during the evening before bed. I also took 10 mg of Cialis and had 90 % hardness to my erection. I really felt like my recovery was coming along and it has changed to a very positive direction.
Thursday, July 24 (6 weeks & 3 days from the LR Surgery)
I did only 5 minutes on the elliptical trainer to warm up. Then I lifted doing shoulders and back exercises. No leakage during this lighter workout. Today, I only used one pad with no UC problems. Things are looking up.
Closing
I will update after my next appointment with my Dr. at the end of October. I wish everyone success in fighting this disease. I feel very fortunate to have found Dr. Wang at the BMC for my LR Surgery. Please drop me an e-mail if I you think I could help in any small way. I respond to all my e-mails regarding PCa issues.
Thanks Terry and fellow YANANOW Mentors!
It's now 4 days and 3 months since by Da Vinci operation (June 9) and I'm 95% continent. I only leak a little when I run (usually at the beginning of the run) and when I lift weights (only two exercises cause me to leak a little when I strain (curls and oblique twists on Nautilus machines). However, the ED thing is another story.
I'm writing this update to describe my visit to Dr. Sex (a.k.a. a doctor at the Center for Sexual Medicine). During my six week post surgery check-up with my surgeon, he suggested I go down the hall and make an appointment to see a doctor at the Center. He said that I should see a doctor there to assure I have done everything to facilitate a full recovery to my erections. Well, sign me up. So, after my appointment I went down hall and asked for an appointment. The appointment was scheduled for six weeks later (September 11).
In the interim, the surgeon said to take the free samples of Cialis he gave me three times a week to help with blood flow and try to have sex under the theory of use it or lose it. Well, since I was only 50 to 60% hard (not able to penetrate), in lieu of sex I took this to mean I should self manipulate. So previous to my visit to Dr. Sex, it was drugs approximately every 3rd day and wanking every other day.
The day comes to visit Dr. Sex. I fill out all those forms and wait a few minutes before a young hefty guy and an older guy in medical garb come out and ask for me. The young guy brings me to an examination room and introduces himself as fourth year medical student (Intern) working for Dr. Sex. He asks whether it would be okay if he asks me questions about my health. I agree knowing that Boston Medical Center is a teaching hospital.
The Intern asks me about the operation, my general health, the drugs I'm taking and my sexual activity before and after. He also asks whether I'd be willing to have an injection into my penis. Cowardly, I admitted that I thought this might be part of this visit. After the interview he leaves to talk to the doctor. The Intern comes back and says the doctor wants to get an ultra sound of my penis to be sure there is no blockage. He further stated that would mean I would need to be injected to induce an erection. I agreed and he brings me to another examination room with an ultra sound. He tells me to disrobe and put on one of those fashionable johnnies. He leaves the room and I strip down. After waiting a while I open the door wondering what happened to him and I find him waiting outside the door.
He tells me he is going to inject me on one side of my penis by the base (near the body about an inch up). He says the needle is small and quite thin so it doesn't hurt very much. I ask whether he was using a tri-mix or a bi-mix. He smiles and says you've been doing some research. I said yes I use an internet site for information and I go monthly to a support group for men with prostate cancer. He starts to fill the needle with a tri-mix to 20 (I'm not sure the units on thee syringe but I'm guessing milli-ccs). I said, "Do you have to fill it up so much, I don't want to get one of those 4 hour erections." He laughs and says this is the normal dosage. Besides they have the antidote if I do have an erection that lasts more than a half hour (wait, doesn't that mean another injection?). He tells me to lay back. I do but I lift my head and lean on my elbows to see what's going on down there. He says lay your head back and I said I prefer to see what he's doing.
He then grabs the head of my penis (easy since I'm circumcised) and pulls it out a little. He then pushes the needle in near the base on the left side and then injects the contents. It doesn't really hurt just a little sting. He hands me a gauze pad and tells me to gentle hold the gauze at the injection site to stop any bleeding. Upon leaving he says he'll be back to see how I'm doing. I ask how long before this takes affect. He says three to five minutes. So, I'm laying there and don't feel anything going on. I'm thinking what's wrong down there, any one home? Well after a while, and I'm sure it was more that five minutes, my penis starts to grow. I don't cover up since this is the object of every ones attention. The Intern returns and takes a peek at my hard-on and says the ultrasound technician will be in in a minute.
I'm laying there waiting with my hard-on waiving in all its glory, when my doctor comes in. Now this is the first time I meet my doctor. He takes a look at my penis and then introduces himself to me lying there. We awkwardly shake hands. He then gives my pecker a couple of squeezes and says the ultra sound technician will be in in a couple of minutes. I wait there and think, now that's two men that have seen me at full rigidity. I think that's the first time in my almost 50 years on earth. Soon the technician comes in (the third man) and he takes some gel, places onto a probe and places the probe near the base of my penis. Now at that point my penis becomes a little flaccid. It was getting shy with all these men around. So, I think I better help this thing and flex my penis a little. The technician immediately states, "Don't flex your penis." Okay, I can do that. He places it on one side, the middle and the other side all near the base. He then hands me a towel and says I should wipe myself off, get dressed and go across the hall to the doctor's office. I adjust my rigging as best as possible and discretely proceed across the hall.
I go to the doctor's office and the doctor and intern are there. I sit across from the doctor and have to readjust myself as I sit. I wasn't too impressed by the doctor who started talking about statistics and studies. Some of the highlights that I can remember is 50% of men have ED after a prostatectomy. (I'm thinking, what about Da Vinci patients and someone 49 years old, I know the younger and the more sexually active a person is before the operation, the more likely a full recovery). He said that there are no well accepted studies that conclude taking Cialis, Levitra, or Viagra promotes a more successful recovery (except a study done by the drug manufacturer that is questionable). Next, he stated that there is a study concluding that injection therapy does increase by something like 37% the likelihood of full recovery (able to penetrate).
He asked what I've been doing since the operation and told him I was taking either (10 mg) of Levitra or Cialis. I masturbate about every other day. No success in penetration. He asked what I wanted sexually after the operation. I said I wanted to return to a healthy sex life that was sex at least once a week before the operation. He suggested I come in for injection therapy where I learn to inject myself and he gets to adjust the dosage. That should get me back to the same sexual schedule with my wife.
He then said he would like to start me on a long term therapeutic schedule to maximize the likelihood to return to normal. That includes continuing taking either Viagra (50 to 100 mg), Levitra (10 to 20 mg), or Cialis (10 to 20 mg) three or four time per week. Now Dr. Sex talked about the Penis Vacuum Device (PVD), mainly pumping the penis up and maintaining it with an elastic. He said that he didn't recommend using a PVD for sex since the penis can start turning purple and can hurt because of the elastic. However, he suggested I purchase a device and use it to pump myself up for ten minutes in the morning and 10 minutes at night. He recommended I purchase one myself (about $90) instead of a medical one ($300) to save money. He stated the only difference is the medical one you can't over inflate, so just take it easy with the non-medical. Next, after the injection therapy sessions, he wants me to inject myself twice a week. Well, a man has to do what a man has to do. But I'm exhausted just thinking about all this.
Near the end of the discussion he asked whether I was still hard. I said, "Oh, ya." It was hard to concentrate all this time with a raging hard-on in my pants. Know I haven't had one like this in over 3 months. I was thinking could you just leave me alone for a while. That wasn't what Dr. Sex was thinking. He said, "We'll have the nurse provide the antidote so you can leave here comfortably." Well here is where the fun begins.
Dr. Sex takes me in to the examination room and asks me to pull down my pants. There it is ready to split diamonds. He gives it a couple of squeezes and so says, "Oh ya, we'll have the nurse give you the antidote." I'm thinking, I can hide this thing on the subway on the way back to the office, no need for an antidote. But I keep this to myself. So, the older guy in medical garb (the Nurse) that I met earlier with the Intern at the beginning of the appointment comes in and introduces himself (the fourth man to see me in my glory). He gives my penis a couple of squeezes and says he needs to give me another injection. He then tells me that he does the injection therapy with new patients and he has one patient that had been injecting himself for 18 years. Ouch, I'm thinking and was that suppose to keep me at ease? So he injects me again by the base of he penis on the left side (hey, let's not wear out that side out). He then tells me to firmly hold the gauze at the injection site for 2 minutes to stop the bleeding right away and avoid scar tissue from forming and causing a curvature of my penis. He then leaves me holding my raging hard-on.
He returns in about 5 minutes and I'm still standing tall and proud and it's starting to hurt a little from being erect so long. He gives it a couple of squeezes and then calls in Dr. Sex, who of course has to give it a couple of squeezes. He then informs me that the nurse will have to give me two more injections of the antidote, one on each side. I've been enjoying the raging hard-on except for the injections. The Nurse injects me on the left and right sides and leaves me alone again. Now, I'm thinking, "Please go down, please go down, please go down." After a few minutes it starts to retreat. The Nurse came in again, gives it a couple of squeezes and says, "Oh, good you can put your pants on." The doctor comes in and says requiring the antidote is good news and it gives him some ideas for the injection therapy sessions. Well, Monday at 10:30 is my first session. Looking forward to that.
I'm writing this update during the fourth week of the New Year 2009. A lot has happened since I last updated my posts, so here it goes.
September 15, 2008
I arrive at the office and was brought to an examination room. Terry, the male nurse, reviewed the last visit and stated that since I reacted so well to the last injection, Dr. Sex would need to decide the dosage for this visit. The doctor came in and said he would like to find the lowest dosage that would work and decided to try 5 units (5/100 ccs) of tri-mix #5. He said that the tri-mix is the most common and was the same as the one I was injected with last Thursday with 20 units. I wasn't too excited to be injected with the same drug that took three antidote injections to get me down.
The Dr. Sex left and Terry proceeded to have me pull down my pants. He showed me how to take an alcohol prep pad and swab the injection bottle, put the syringe in the bottle and pull the tri-mix into the syringe. He then swabbed my right side of my penis and inserted the needle and depressed the plunger. There's only a prick when the needle is inserted and a sting when the tri-mix is injected. He repeated how important it is to hold a gauze pad firmly at the injection site for a couple minutes to avoid scar tissue from forming which could cause a curvature of the penis. He then said he'd be back in few minutes. I asked how long it usually takes and he said approximately 5 to 10 minutes, leaving me holding a gauze pad firmly on my penis.
Terry returned and squeezed my hard on a couple times and said "good … I'll go get the doctor." Dr. Sex and Terry returned. Dr. Sex gave my hard on a couple squeezes and said that's good. That's the lowest dosage we usually prescribe. He said he wanted to make sure it goes down on its own and said I could get dressed and wait for about a half hour in the waiting room. I dress and rearrange the rigging so I was concealed as possible. I go to the waiting room and there's a man and a women waiting. I sit in the corner and wonder why the woman is waiting there. I'm also hoping she doesn't notice that I'm try to conceal this one-eyed monster in my pants. I cross my legs and pretend to be engulfed with the book I brought.
After about 35 minutes, Terry called me back to the examination room. I pulled down my pants and Terry could see it was going down. The doctor came in and confirmed the deflation and it was time to zipper up. The Dr. said I was being prescribed Tri-mix number five and said that 5 units is a good dosage to start. The mix I have contains 30 MG of Papaverine, 1 MG of Phenotolamine, and 10 MCG of Prostaglandin. He said I should increase or decrease the dosage by 1 unit or 2 depending on how successful I am with sex. The cost for 200 milli-ccs was $60 dollars so that's a little over $1.50 per stiffy.
I rate the injection's result at about 100%. However, this was with some experimenting with dosage and technique. They sent me home saying to inject myself with 5 milli-ccs. That amount didn't quite do it, so I now inject myself with 7. There are all sorts of mixes of three drugs. Some mixes use just two of the drugs (bi-mix) and some all three drugs (tri-mix). The objective is to find the lowest dosage of a drug that gives you a stiffy without needing to get the antidote, which usually means a trip to the emergency room for a shot of the antidote. Finally, the doctor said goodbye and wished me well but wanted to see me in 2 months. So, I had an appointment set for November 1.
October 28, 2008
I had a second appointment with Dr. Wang, my surgeon, for my second appointment post-surgery (about 4 ½ months after surgery). He didn't check my PSA since Dr. Sex checked it during my September appointment (3 months). I told him I was 99% continent with some leakage during long runs and a couple lifting exercises at the gym. He was very happy with those results. Next, we discussed ED. I said I was about 60-70% pre surgery and that the injections work well. He said to continue seeing Dr. Sex and was confident ED would eventually be a non-issue. He said he did not need to see for at least six months. I requested that I go back to my local urologist and he said that would be fine and would send the records to him. I thanked him and we said goodbye. I felt like giving him a big hug but I'm not really a big touchy-feely person and sensed he wasn't either, so avoided the awkward. However, I sensed he saved my life and I may not every see him again.
I soon called my local Urologist, Dr. Blander and asked to see him 3 months after my last PSA test September 11 (not wanting to wait 6 months during my first year post-op). He agreed that a 3 month visit and another PSA test would be appropriate. An appointment was made for December 9th a few days before my wife and I go on vacation.
From my late October appointment until early December, I was injecting my self twice a week and using oral ED drugs twice a week. I also used the vacuum penis device a few times a week. The whole process is quite exhausting and I am more sexually active then before the operation.
November 8, 2008
My knees have been bothering me and 4 days ago I had an MRI on my left knee. Got a call yesterday from my doctor who said I have a couple small tears in my Meniscus. He said that the injury is not too bad and doesn't recommend scoping or surgery unless the pain gets so bad that I can't do what I want to do. I interpret that as I have a green light for the marathon the next day. I signed up for the 50 miler but will be glad to complete the marathon (26.2 miles or 42.3km) .
I ran the marathon with the thought of LR surgery just five short months previously and turning 50 in two weeks. I was going to complete this marathon no matter what. The course is on a 12.5 mile loops (2 loops + 1.2 miles) in a state forest. It was my slowest marathon (4:43) but also my first trail marathon. I was determine to run without a pad and really had no problems. I leaked a little bit (very little) but no one would notice with all the sweat anyway. I completed the marathon and feel good about my recovery. I just wish the knees would cooperate.
December 1, 2008
My meeting with Dr. Sex after two months of using the injections was pretty uneventful. He asked how the injections were going and I told him that they worked well but I had to increase the dosage to 7 milli-ccs. I also said I liked the injections better than the oral drugs because the injections are 100% successful and you don't get any side effects (headaches, nasal stuffiness, high blood pressure, and some blurriness). He said there was no need to meet again unless some problems arise (or not). However, he explained that he could only write prescriptions for a year from this date. If I need more supplies or tri-mix I should contact him before one year to stock up. He said I could contact the nurse Terry by email for any supplies. After that one year period I would need to have another office visit. He also gave me some more free samples of Cialis and Viagra and another prescription for them. I thanked him and I was on my way.
December 9, 2008
A few days before my meeting with Dr. Blander I went to the hospital to get blood drawn for another PSA test. Dr. Blander told me that my PSA result was less than 0.03 ng/ml (below the laboratory detection limit). I felt confident that this was going to be the result. I showed him my five incision locations. He asked me how my incontinence and erectile dysfunction was going. I stated I was 99.9% continent but had an occasional leak from stress, cold or during sex. As far as ED, I explained I was using injections, oral drugs and the PVD. However, I stopped using the PVD and I was having more nocturnal erections. Overall, I thought I was getting better with the ability to occasionally maintain a 90% erection without drugs. Overall, would rate my erections between 70 to 80%. He thought that was good and should continue doing the things I was doing. He gave me some free samples of Cialis and Levitra. Next meeting with Dr. Blander is March 10 and I need to get my blood drawn 10 to 14 days before the appointment.
I feel very confident that I'm cured of this disease. However, I am very interested in staying knowledgeable about the treatments for prostate disease and the psychological effects. Therefore, I attend a monthly Prostate Cancer Support Group at the Beth Israel Deaconess Hospital. Although hopeful of a full ED recovery, I am gaining knowledge and strength to understand the alternatives if ED continues including the surgical implantation of a prosthetic penis. The group is also a great way for newly diagnosed men to meet others that have received all sorts of treatments and everyone feels free to give their opinions of surgeons in the greater Boston area. I'm meeting a newly diagnosed man who read my Yananow story. These meetings take place on the first Monday of each month. Drop me an email if you'd like more detailed information regarding the time and place. I'll check in again after my doctor's appointment in March.
Keep well.
Steve submitted this update in March, but it didn't get through, so he re-submitted in April.
March 10, 2009 On February 26, 2009, I went to the hospital to get my blood drawn for another PSA test for my nine-month doctor's appointment on March 10. At the appointment, Dr. Blander, my urologist, told me the good news that my PSA result was less than 0.03 ng/ml (below the laboratory detection limit). We discussed urinary control, which I felt I was almost 100%. There's only a few lifting exercises at the gym (straining while performing a seated arm curl and a seated twisting Nautilus exercise for your lats) that only cause an occasional little leaking. I've been lazy with doing my Kegel exercises, so I feel I wouldn't have any issues if I was doing them. We both agreed that this was a great recovery.
As far as ED, I no longer use the vacuum and only use the oral ED drugs once or twice a week. However, I still use the injections to be assured of successful penetration during sex. He said to continue what is working and I said I hoped to be able to give up the injections before the 12-month appointment.
He then asked about my overall opinion of Dr. Wang at the Boston Medical Center because he has referred other patients to him and wants to know if he should continue. I told him I was very satisfied and very happy with the outcome from the LRRP. I told him that Dr. Wang spent time with patients during the decision making phase and was understanding and responsive. His receptionists, Lan, was very responsive to all questions and request. I also spoke very highly of the hospital stay because the floor you stay on is for Urology Department and the nurses and staff are trained for issue involving these types of patients. I said the follow up could have been better, but my biggest concern was the results from the operation. I also said that at first, I was very concerned with the scar at my bellybutton, but you can't even see it know. My wife has always said shame on me, Dr. Wang has appeared to cure my cancer & I'm concerned with a bellybutton scar. Go figure.
He then explained that normally a doctor is suppose perform a DRE at these post-surgery examinations, but he said how he doesn't understand the usefulness since there isn't anything to feel. I agreed, so we skipped that one. He checked my scars and examined the rigging for scarring (from the injections). All was okay, so I was on my way. I again asked for some free samples of ED oral drugs since my insurance doesn't pay. To-date, I haven't had to pay for any of these drugs. I hope I never have too (in other words, I'll have no ED issues).
During the last month or two I've been able to help out a couple others. One guy was recently diagnosed with PCa and another has been almost fully incontinent and with ED issues. I have talked them into coming to the PCa support group that meets at the Beth Israel Deaconess Hospital in Boston on the first Monday of each month. I find reaching out a hand very fulfilling and helps me with my own recovery issues. If you're in the Boston area drop me a line and I'll forward the information to you for the next meeting.
I respond to all my e-mails, too. Keep well. Steve
July 31, 2009. On June 8, 2009 I went to see my local urologist, Dr. B, for my one year post LRRP check-up. I got blood taken about a week before, so we had the PSA results to discuss. My PSA was less than 0.01 or non-detect. I was relieved but had felt that this was going to be the result. I find a positive outlook is the only way to venture until I find out anything different. It works for me.
We discussed ED and UC. I told him I was 99.9% continent. Just an occasional dribble if exhausted at the end of the day, really stressed out and tired, and occasionally when I perform a couple lifting exercise at the gym. However, recently the lifting exercise incidents happen less and less. I find if I inhale during the lifting portion of the exercise, I don't put an unusual strain on my bladder. As far as ED, I would say I'm like 90%. The main problem: I seem to need more stimulation to maintain an erection which sometimes causes failure to complete the deed. Therefore, I still use the injections to make sure I succeed.
The Blue Cross insurance for federal employees still doesn't cover oral ED drugs even for men post RP. So I've been asking for free samples at each doctors visit and have a good stash. I take 5 or 10 mg of Cialis once to twice a week. The stash should last until my next six-month appointment. After that, maybe, I won't need them (one can only hope).
Psychologically, I feel good and fairly calm. I'm amazed how the last year has gone by so quickly and how the diagnosis process, the operation and the worst of the recovery seems, so distant (oh, how I hated that catheter). I feel as though the edge to my emotions and feelings toward the disease and process of recovery has greatly softened. I'm amazed at how raw my feelings were when I reread my own story. Almost like ... was that me? The human mind has an infinity to forget adversity.
I still go to monthly prostate cancer support group meetings, through which I have met a couple men I feel as though I have been a positive influence to during their own battles with this disease. Until my next six month check up, I wish you all well.
i just got some recent news that my brother has been diagnosed with prostatectomy cancer. He has chosen robotic laparoscopic surgery and I hope his surgery as successful, if not more so, than mine. I had surgery when I was 49 and have recently retired at 62. He is 3 years older than me. I do not think of my prostate surgery and battling cancer any more, but what a surge of memories since after the phone call from my brother.
I have a little leakage when in certain crouched positions when applying force in my gut. I'm also mre prone to leakage when tired or cold. This is not a life altering problem. Keep fighting the good fight!
Doing well and have gone over 15 years since my prostatectomy with a 0 psa. Just living life including all the down falls of aging including knee replacement, shoulder replacement, and hernia. My brother had a prostatectomy a couple of years ago and is doing well except for a Alzheimer diagnosis. Looking to keep moving forward in life. Peace