YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Jack Long and Kathleen live in Mount Dora, Florida, USA. He was 49 when he was diagnosed on March 26, 2006. His initial PSA was: 3.0 ng/ml, His Gleason Score was 6 and although he does not state it, his staging would have been T1c. His choice of treatment was DaVinci surgery. Here is his story:

Ever since my father was diagnosed with prostate cancer ten-years ago at age 67, I've been getting tested every year. He opted for surgery and has had an undetectable PSA ever since. Obviously, he made the right choice.

My PSA had gone from 1.8 ng/ml to 3.0 ng/ml, back down to 2.2 ng/ml and then back to my most recent reading in February of 3.0 ng/ml, all within a period of about two years. A biopsy was done and out of 12 cores, 4 were benign, 3 were atypical and 5 were cancerous with <5% of the cell involved. I was assigned a Gleason score of 6. I was told that this was significant early stage cancer with an intermediate chance of spreading, and was told by my urologist that the chances of the cancer being confined to the prostate were statistically, very good.

After conducting research for the past year in anticipation of this moment, and a long conversation with my urologist, I opted for the DaVinci surgery and will have it performed on May 21, 2007 at Florida Hospital in Orlando. I've always been in pretty good shape, running 20 to 30 miles a week, and have stepped it up a notch in anticipation of my surgery. I want to be in the best possible shape of my life before I go through this thing. Hopefully, it will help me to recover faster.

I'm very nervous and scarred, but moving forward in a positive manner. I hope to report back with great results. Keeping my fingers crossed.

 

UPDATED

June 2007

 

# 1: This morning I went in for my pre-surgery testing. EKG, pulse and blood pressure were all normal, and my blood work should be fine if there's no drastic change from my last test. I did not have a chest X-Ray since I have never smoked. Anxiety is now slowly increasing since it is currently four days before surgery which is scheduled for 7:30 a.m. Monday, May 21st. And I'd just like to mention that Ed and Jay, both prostate cancer survivors and members of YANA, have been great mentors in guiding me through these uncharted waters. They've been a great comfort.

 

#2: I had the robotic surgery done on May 21, 2007 at Florida Hospital in Orlando. Dr. Rakesh Patel performed the surgery and Dr. Jeffrey Thill assisted. The surgery only took a little less than two hours and went extremely well. All during the surgery my family was kept updated by the surgical nurse. They knew what was happening at every stage. The thing I first remember upon waking up in recovery was feeling a sensation of having the need to urinate but could not. The nurse told me this was common and to just "let if flow." It felt like everything was backing up in me but a few minutes later the nurse told me that urine was now flowing in the catheter.

Upon being wheeled out of the elevator and to my room, I noticed my family in the waiting area. They were all smiles and I knew the surgery went well when my sister ran up to tell me that Dr. Patel told the family that I should be fine given that the surrounding tissue looked healthy, but we would have to wait for the final pathology report.

Well, I received a voice mail message today from Dr. Patel who said that "the pathology report looks pretty good, the cancer was confined to the prostate and the surgical margins were negative." I must have listened to his message ten times to make sure the message was correct. Barring any complications, I'm scheduled to have the catheter removed next Tuesday, the day after Memorial Day. I'll report back in order to let everyone know how my continence is.

As far as post surgery, I'm definitely sore but walking around the block four times a day. There was no pain whatsoever associated with the robotic surgery. Discomfort, yes, but absolutely no pain. The only medication I had so far is Tylenol. Amazing considering this type of surgery. I've gone on to more solid foods and hope to have a bowel movement soon. I'm no different from everyone else who has had this surgery when I say that the catheter is a pain in the ass to deal with and I can't wait to have it removed. Looking back right now, and even though I don't know how the continence and sexual functions are going to turn out, given my age, family history and Gleason Score, having the prostate removed was definitely the right decision.

# 3: May 21st, 2007 - My surgery was performed at Florida Hospital in Orlando. I awoke at 3:00 a.m. in order to take the last step in the Fleet Prep Kit #1, the dreaded suppository. I don't think I could have been anymore cleaned out and ready for surgery. I hit the road at 4:00 a.m. with my wife and sister who was there for support. We left early since we live about 35 miles from the hospital. I checked in at 5:00 a.m. and afterwards a nurse took us to the prep room, but not before an emotional hug and goodbye to my sister who had to wait in the family waiting room. I undressed, put on the gown and the nurses started surgery prep. After the prep was done the hospital chaplain came by and held hands with us and we prayed for a successful outcome. Finally, the time came for me to go to surgery and my wife and I had a very emotional goodbye and I told her, "See you in a few hours, cancer free." I was wheeled into surgery and was introduced to a student nurse who would be watching th enire procedure. I kidded with her and asked her if she always got this close on a first date. My doctor came in and told me not to worry that everything would be fine. I also noticed the DaVinci machine covered in plastic. Surgery was scheduled for 7:30 a.m. but did not start until 8:00 a.m. since time was needed to "warm up the DaVinci." The last thing I remember is having the mask placed over my face and then it was lights out.

Later, I woke up in the recovery room and the first sensation I felt was this overwhelming sense of having to urinate but couldn't. I told the nurse that the tip of my penis hurt and it felt like it was backing up with urine. She told me that was common, and to just let "it flow." Yeah, right, like I had any control now. I had no idea what was happening down there. A few minutes later she told me the catheter bag was now filling up with urine and that I would be going to my room soon.

Upon being wheeled out of the elevator on the way to my room, my wife, father, mother and three sisters were waiting for me with big smiles and told me that I looked great, and my oldest sister came up to me as I was being wheeled to my room and whispered that "You're going to be fine, the surgeon told us everything went great!" After being wheeled to my room my wife told me that my surgeon told her that the surgery went very well, and was performed in just under two hours. The prostate peeled away nicely and the nerves were spared. Next test, the pathology report which I would receive a few days later.

Later that afternoon I was walking around the halls and feeling pretty good. I had no problems with pain nor with any gas. I was sore in the gut though. Gee, wonder why? I ravenously ate the two bowls of jello and one bowl of broth and drank the cup of coffee that I had for lunch. After having to fast the previous day anything placed in front of me would have tasted good. My doctor came in later and told me the same thing he told my family - successful surgery, nerves spared, no complications at all. Surrounding tissue looked good but he couldn't make any statement regarding the prostate being confined until the final pathology report. No problems during the night except that I had techs coming in every hour to take my vitals. No way to get any sleep that way.

May 22, 2007 - After a visit from my doctor at 7:00 a.m. with some last minute instructions, I was advised that I would be discharged in the morning. After breakfast, yes, jello, broth and coffee again, the tube in my stomach was taken out, I was cleaned up and given catheter bags and instructions along with my prescriptions. After the forms were signed confirming that I received all the instructions I was released on a beautiful Tuesday morning. Later that day I walked twice around the block. Time for recovery.

May 23, 2007 - Somehow I missed a call from my doctor but he did leave me a voice mail message which I will never forget - "Hi Jack, I just received the final pathology report and it looks pretty good. The cancer was confined to the prostate and the margins were negative." My wife and I hugged each other and both shed a tear as I told her, "We got it babe, we got it in time." Although the chances are very good that my PSA will remain undetectable in the next few years, still, I'll have anxiety waiting for the results for the next PSA test, and every one thereafter. But hey, why worry about that now.

May 24, 2007 - Recovery is going well. No pain whatsoever. Just soreness. Started on some solid foods today and had my first solid bowel movement which felt wonderful. I will say that the catheter is a real pain to deal with, and the tip of my penis burns and is sore. No big deal there. It's just something everyone who has surgery goes through. Still, I can't wait to have it removed.

May 29, 2007 - Follow up appointment today with my doctor and if everything is healed the catheter will be removed. I had X-rays taken, a dye inserted in my bladder and then removed after another X-ray and after my doctor reviewed them he told me everything looks to be healing nicely and the catheter would be removed. Thank God! I felt a little pull in the penis as the catheter was removed, no pain, and since I hadn't had any fluids that afternoon there was little leakage. I then placed on my Depends brief. What a weird experience that was. We also went over the final pathology report. The report upgraded my biopsy Gleason score from a 6 to a Gleason 7 (3+4). The tumor location was bilateral, multifocal and approximately 15% of the glandular areas observed were involved by tumor, the largest measuring 7 mm. No extraprostatic invasion, no seminal vesicle invasion, no angiolymphatic invasion and negative margins. The report just confirmed my decision to have the prostate remov ed. I just have a feeling that given my age (49), this cancer would have spread at some point down the road where it would have been much more difficult to deal with. We drove home and by the time we got there although I did have leakage, I could control my urge to urinate long enough to get to the bathroom.

June 6th, 2007 - Well, it's been 17 days since my surgery and 10 days since the removal of the catheter. Physically I feel great and am eating whatever I want. Although I can control my urine and have a good strong stream, I do have a problem with leakage whenever I'm up walking around and going out on my 3 mile walks. It's an incessant dribble or drip that is really bothersome. At night I'm dry, although I will get up four or five times to urinate. No trouble holding it till I get to the toilet. I'm also fine while sitting. It's just the walking whenever I'm up and about that presents a problem. Currently I'm going through about three or four Depends pads a day. It all depends (no pun intended) on how active I am. The more active the more pads I need to use. I really envy the guys here who had no leakage and complete control after the catheter was removed. However, I think those guys are the exceptions rather than the rule. Most of us experience leakage to some degree. I'm doing my Kegels and am trying to be patient. Hopefully the leakage will start to minimize soon. I'll report back.

One Month Update - June 18, 2007.

Well, its been one month since I had my surgery. I took three weeks off from work and returned on the fourth week, working part time, although its closer to full time - 6 hours a day, five days a week. Physically I feel pretty good, although I'm still tired, but attribute this to the fact that I'm getting up three to four times a night to urinate. I have a good strong stream and have no trouble holding it till I can get to a toilet. My commute to work takes 35 minutes, and twice I've felt the urge to urinate 15 minutes into my commute even though I relieved myself at home before I left. Fortunately I've been able to hold it until I get to work when I make a dash to the toilet. Although I haven't used it yet, I keep a jug in my truck just in case I can't make it. I had a weak bladder before my surgery and I suppose this won't change. Whenever we go anywhere I'm always checking out to see where the closest restroom is located.

So, as far as regaining continence, things are much better than the week after the catheter was removed. I don't wear a pad at night but will wear one during the day to catch drips that will occur. I can usually make it through the day with one pad. No leaking when sitting or standing. Sometimes I'll feel urine starting to leak after sitting and then abruptly standing up but I'm usually able to 'Kegel' in time to catch it. No leakage sneezing or laughing. I walk three miles a day, usually in the evening, and am still getting some moisture in the pad from leaking. However, its not as bad as my first walk when I soaked the pad, but I'm anxious to see if I have any leakage when I resume full activity two weeks from now, like cutting the grass, doing yard work, running, etc. For now I've eliminated all coffee, tea and alcohol until I'm fully continent. I never drank much alcohol but I do miss my morning cup of coffee. I'm still doing Kegels three times a day - Three sets of 15 quick ones followed by 15 "slow and hold" for five seconds and then another 15 quick ones. During this whole ordeal the incontinence has been the toughest to deal with. But I do realize its only been a little less than three weeks since my catheter was removed. I'm just impatient.

As far as erections I've had no trouble as long as they are "assisted". I still haven't been able to wake up with an "unassisted" one though. I started Viagra yesterday and it seemed to help. Erections are strong enough for intercourse but it sure is different, and the dry climax is really strange, but I'll get used to it. As with a lot of guys here, my main priority was 1 - eliminating the cancer; 2 - regaining continence; and 3 - having erections again. I'm very fortunate to have a loving, caring wife. We've been together 18 years and I know I'm not exaggerating when I say I could not have made it this far without her. I am a lucky man.

My next appointment with my urologist is the 28th of June. He'll probably schedule me for my first post surgery PSA then. I'll report back with the results. And if anyone has any questions about my experience, feel free to contact me. We're all brothers in this fight.

 

June 28, 2007 - Five weeks post surgery and four weeks post catheter removal.

Just returned from my appointment with my urologist. He was delighted with my progress. Five weeks post surgery and I've had erections (assisted) and even woke up when one at 3:00 a.m., although I attribute this to the Viagra I had taken earlier in the afternoon. Still, assisted or not, if the old boy will rise, I'm happy. On the continence front I still wear a pad during the day to catch drips and times like this morning when I sneezed so hard that no matter how hard I "Kegeled," I couldn't stop the squirt that went into my pad. No pad at night, and I'm finally getting some sleep since I'm only getting up once during the night to urinate.

The bladder is slowly healing and regaining capacity to hold urine. I have a 35 minute commute to work and relieve myself before I leave home, and usually I make a dash to the men's room as soon as I make it to work. However, today, I didn't even use the men's roo m till about a half hour after I arrived at work, so, things are improving. I still leak a little when I do my 3 and 4 mile walks and will wear a pad, and still have to catch a squirt sometimes when I stand up after sitting.

I also had blood taken to see what my first post surgery PSA will be. After all I've been through (the first indication of a rising PSA and fear of cancer, the fear of the biopsy, waiting on the biopsy result, the surgery, post surgery issues) I'm trying not to even think about the first post surgery PSA result. Obviously I'm hoping for "undetectable." The final pathology report stated that the surgical margins were negative although the Gleason was upgraded to a 7 (3+4) from a biopsy of Gleason 6. So, my chances are pretty good that the PSA should be undetectable.

I'll be back to let you know.

 

July 5, 2007 - Received my first post surgery PSA results via phone message today and thank God it was "undetectable." I was somewhat worried because my PSA test was taken 5 weeks post surgery, and everything I've read stated that you should wait between 8 and 12 weeks to have your first post surgery PSA test in order for all the PSA to leave the blood. Maybe since my PSA was only 3.0 it didn't' take that long to leave my system. I don't know, I'm just glad it's undetectable.

My 3 month PSA test will be September 28th, but for now I'm not even thinking about it. I'm going to get on with life and cross that bridge when it appears.

Almost seven weeks post surgery and things are improving on the continence front. We attended a Fourth of July event yesterday for about three and a half hours and I had no trouble at all, and only had to use the men's room once. There was a brief squirt that I had after I stood after sitting but I caught it in time. Right now that seems to be my only leakage or when I make a sudden jerk or move in my chair. These moments really catch me off guard. I took an hour walk Tuesday and for the first time, finally, I had no leakage. Let's hope that continues. I also walked the stairs in my house for a set of 50 and had no leakage. No leakage cutting the grass or doing yard work either. I cut my Kegels down to three sets of 30 a day. I hold it for a count of 5, rest to a count of 5 and then after 30 I'll do 30 quick contractions. Fours sets seemed to be a little much and I felt that I was doing more harm than good. I've been without the pads for a week now and am being very cautious. I still keep an extra pair of underwear and pad with me at work. Just in case.

No problems on the erection side. This past week I've awaken twice with erections without any help from the Viagra. These are usually a 7 or 8 on a scale of 10. I haven't tried sex yet but that will be soon. I'll continue to report on my progress. Feel free to contact me if anyone has any questions. As I said before, we're all brothers in this fight and should all be there for one another.

UPDATED

October 2007

 

 

October 5, 2007 - I'm just about five-months post surgery and today, I received my second post-op PSA result which was <0.1. It's amazing how the anxiety completely drained out of my body once I heard the result. I go back again for another test on December 20th and I'm sure Mr. Anxiety will appear once again but for now, I'll celebrate with a prayer of thanks and a glass or two of fine wine.

Continence wise I'm about 98%. I have, or have never had any urge incontinence, and I can lift weights, walk at a brisk pace for an hour or hour and a half, exercise on the stairmaster for 45 minutes, work in the yard, and do most if not all activity without any leakage. The only problem that remains is when I try to run. I was running 25 miles a week before surgery and everytime I try to run now I start leaking small amonts of urine. My doctor told me it's the pounding from the running on the bladder and the sphincter isn't strong enough yet to close completley when the pounding starts. It's frustrating but hey, otherwise I'm dry so I'm not going to complain. Also, I've now gotten into the habit of Kegeling whenever I cough or sneeze which stops any leaks. I've been Keegeling every day since the catheter was removed and will continue to do so. I feel like I could crack a walnut now if you placed one between my butt cheeks! The minor stress incontinence that will catch me off guard once in a while has such a minor amount of leakage that it's not an issue.

Erections were never much of a problem although I do use Cialis. I haven't tried having sex without it yet but will try do so in the near future. The damn stuff is so expensive that my wife and I now have to "schedule" our sex times since I'll know when to take a pill. I find that if I take one on Saturday morning it will last until late Sunday.

So guys, that's about it for now. I'll report back in December. Looking back over the past five-months I can say that choosing surgery was the right decision for me, especially given my family history and my post-op pathology report that showed that although the cancer was contained, it appeared to be of the agressive sort. Thank God it was caught early. Although it appears surgery was a success and right for me, I'll never advocate surgery to anyone - we're all different, but I will be more than happy to relate my experience to anyone trying to make a decision.

Peace, love and 0 PSAs to all.

 

UPDATED

January 2008

 

 

January 3, 2008 - I received my third post-surgery PSA test results and I'm joyful and thankful to report that seven and a half months post op my PSA remains undetectable. Waiting for this result was a little more stressful that the past two since my blood was drawn on December 20th, and I had to wait until today to receive the results due to my urologist's office being closed four days over the holidays and staff taking vacation. Usually I have my results in about five days.

Looking back before surgery, I was under the fallacy that once the prosate was removed and if the pathology report stated the cancer was contained, there was really not much to worry about. It was guys who received alternative treatments that involved keeping the prostate that had to worry about the cancer coming back. I couldn't have been more wrong. Whatever treatment we choose, all of us have to worry about post treatment PSA results. We're all in the same boat, and I pray for all here to have undetectable PSAs.

I'm now a little over seven months post-op and if I can continue to pull a 0 PSA, consider my surgery a success. I'm fully continent and have no trouble achieving erections. I can now spend 50 minutes on the treadmill running five miles and stay dry. This was my self imposed last "test" for considering myself fully continent. Sometimes I can even have an erection without the help of Cialis, although I'm in no way ready to throw away my prescription. As I've stated before, I will never tell someone to have surgery, each situation is different. But I will be happy to relate my experience to anyone, and help you through this life changing bump in the road.

I go back for my fourth PSA test on March 13th and will hopefully report back with another undetectable PSA. Until then, good luck to all.

 

UPDATED

March 2008

 

 

I had my fourth post-surgery PSA test taken on March 13, 2008 and I'm happy to report that it is still undetectable, <0.1.

My next test will be in June and if it's still undetectable my surgeon is going to put me on a six-month test schedule. If it's still undetectable after that I'll go back to what it was pre-surgery - once a year.

Hard to believe that it's been one year since I was first diagnosed. I still remember walking around waiting on the results of my biopsy wondering what the future would hold. What a year it's been.

I will say that the anxiety I felt waiting on the results of the previous three PSA tests was not there this time. In fact, after my test I never thought about it again until four days later when I thought it was time to call in to get the results. The anxiety only returned when I was waiting for the nurse on the voice recorded message to give my name and the test result. When I heard the result I gave a big sigh of relief, thanked God and had a glass of wine in celebration.

So, it's been 10 months since my surgery, my PSA is undetectable, I can achieve erections and am fully continent. As such, for me personally, having the prostate removed was the right decision and as long as I can keep pulling 0s on my PSA tests I consider my surgery a success.

I will say once again that I will never tell or recommend to a PC brother what course to follow in deciding what treatment to take, but I will be more than happy and eager to relate my personal experience in helping anyone to come to a decision. Some guys I've spoken with have had the surgery, others have taken a different route. It's a personal decision, albeit a tough one, that we all have to make.

See you all again in June. Hopefully I'll be able to report that I pulled another 0 PSA and go on six-month testing. .

Jack's e-mail address is: jlong23@cfl.rr.com