Firstly, thank you to all who inputted their story previously. It helped me and I hope my story helps someone as well.
I had NO symptoms. I did not have annual physicals. I thought I was healthy. My dad was diagnosed with prostate cancer some time ago. My mother, who I phone every weekend would start our conversation with...did you get your PSA checked? I, for a very long time, said not yet but I will make an appointment next week. Not wanting to hear what I considered "badgering" (thank goodness for badgering mothers), I did make the appointment and went November 4 2004, my PSA at that time was 4.2 ng/ml. The doctor said to me ..don't worry about it, you don't have cancer and I left his office.
That number did bother me. For some reason I then called the urologist (where I had a vasectomy in 1997) and told him I was bothered by the 4.2 number.
He said, let's take it again, we need more numbers on the curve. In March 2005, it was 3.8 ng/ml. He then said come back in 6 to 9 months. I went back after Christmas vacation, January 6, took the test and the PSA was 5.2 ng/ml. He said, not good, we need to biopsy. That was done the next day, Friday, in his office (I didn't feel a thing and would not say it even rose to the level of discomfort). Following Friday got the results. Left side on the prostate (6 samples) were clean. Right side was 75% cancerous in 5 of the 6 samples taken, Gleason 6.
I was depressed for two days. Thought my life was over. Wondered what my wife and four kids were going to do without me? After two days (lost 10 pounds) I realized this was not doing any good and I needed to research and figure out what I was going to do?
Meanwhile, doctor scheduled a bone scan and cat scan. While taking the bone scan, the technician led me to believe that the cancer had spread to my brain!!! because he saw a "hot spot" there. Now my research tells me that I have six months left to live. That was a very bad night for me. Anyway, the results came back NORMAL. I was shocked, how could this be? The technician didn't know what he was talking about.
The consultation with my urologist covered "his" options, radical prostatectomy, radiation, freezing and seeds. I had mentioned to him, what about this new procedure called the da Vinci robot method? He said well the end result of that and the radical is the same! Further discussion resulted in him referring me to Dr. Mark Kawachi at the City of Hope.
On February 21, 2006 from 3-6pm I had the procedure done. The NEXT DAY the doctor asked me if I wanted to go home. I physcially could have, but emotionally I felt that I should spend at least 24 hours in the hospital?? So, I said how about I go home tomorrow, he said OK.
That day is today. My wife drove me home this morning to San Diego (about 2.5 hour drive).
I am moving a little more slowly than usual. I am a little black and blue. I don't really feel much discomfort except when going from a sitting to standing OR standing to sitting position. So, I do it carefully, no big deal.
I am wearing a cathether, again I find it no big deal. It is not uncomfortable. In fact, I don't have to get up in the middle of the night now to go to the bathroom.
I have an appointment next Wednesday to follow up with the doctor. He will remove the cathether and discuss the results of the prostate pathology with me. That is my next milestone of concern. He did say to me, however, to the naked eye everything looks good. And, that he did not remove the nerve bundles.
Obviously, my hope is that the cancer was confined. If not, then I will set out on my next research project of how to deal with that. But, for the next week I am going to try to relax and heal.
My advice to you is:
1.) Don't let your mind go to all the bad things that can happen, mine did and so far so good and
2.) Don't take the first doctor's advice. Do some research on your own, there may be something better for you.
I do highly, highly recommend Dr. Mark Kawachi. He has done 1000 of these operations and he is a very nice guy.
Got a great night sleep last night at home. Sleep in the hospital was interrupted. Nurses always wanting to take blood pressure, temp etc... Also, in the hospital I still had that inert gas that they pump into your stomach. It's more comfortable to walk and try to pass it, then lay in bed. So, the second night, I walked from 2 to 3 am in circles in the hospital room.
One concern I had was sleeping with the catheter. I didn't want to accidentially pull it out. I first changed to the larger bag for night sleeping, that went well. I propped myself with pillows so I wouldn't turn over. Seems like I did roll on my right side, and the velcro that secures the line from the penis to the leg did undo. I immediately realized this when I awoke, or maybe I awoke because I felt tugging on my penis. Anyway, no damage done, I replaced the velcro piece and started my day.
My next concern was taking a dump. Today is the fourth day since the last time. It's kind of amusing, this is something I've done for 52 years and now all of a sudden I'm feeling some trepidation. It's really because of the location to the surgical site and my concern is discomfort. The doctor did prescribe stool softeners and I have been eating oatmeal and dried fruit in addiiton to other foods. Well, this morning it happened, and it actually felt great.....another milestone.
Generally speaking, I feel good. Again, moving a little more slowly than usual. And, any movement requiring strain on the stomach muscles has to be done slowly. My wife, kids and myself are cautiously relaxed today, as compared to the very stressful pre-surgery time. Cautious because I still have that appointment next week to discuss prostate pathology with the doctor.
Drove up to the hospital the night before my next day appointment to discuss prostate pathology and have the catheter removed. I have had the catheter in for six days now. While at the hotel, I noticed blood and scab material in the urine bag. It was a little worrisome at first, but figured I was in the right place. Only two minutes from the hospital. I relaxed and drank some fluids and further urination was clear. Later, I realized what probably happened. In the car I had stretched way forward in order to pick a book up off the floor. I probably pulled something at that point.
Next day met with the doctor's nurse, and received in writing the official pathology report. It had the best result that I could hope for........ CANCER CONFINED TO PROSTATE.... will never forget those four words.
It's somewhat surreal at first, kind of like you're dreaming, and I did ask myself, is this really happening? But, there comes the point you say, yes, this is really good news.
Nurse also removed the catheter. She pumps in about 4 oz of saline solution, then asked me to take a deep breath and exhale. As I exhaled, she pulled out the catheter. Did not hurt at all. She then asked me to hold the solution, and pee for 3 second, hold for 3 seconds, pee again for 3 seconds. I did this 4 times. I had total control. I did wear a pad home but did not need it. Never used a pad again and have had absolutely no problems. I have total control. In fact, peeing now is much better than it was. Prior to the surgery I would stand and have to wait to get a slow stream going. Now, it's just right there and strong, kind of like it was 30 years ago. Nice.
I am now about 10 days post surgery. I feel very good, but yesterday I had another incident where, when I went to pee, I had a few drops of blood come out. Again, that was an isolated incindent (and I'm told expected) and has not happened again. Generally speaking, I feel very good. I probably feel better than I should because I want to start doing things almost forgetting I just had major surgery 10 days ago. So, I am forcing myself to relax and take it easy.
I am anxious to get going in the bedroom. Physically not much there yet, but definitely slight movement. Doctor said anytime from 4 weeks to 18 months. Will start taking Viagra next week. This is actually part of the regimen. Apparently, in this case if you don't use it, you literally lose it. I am confident this will return also.
I am so thrilled with the expert work of my doctor Mark Kawachi at the City of Hope, along with his truly dedicated staff. Not only, are they very technically competent, but all very nice (which is what ultimately is important because I have no plans to socialize).
Today is 21 days post surgery. I am healing very well.
As I mentioned earlier I never had a problem with continence. I wore a pad for the drive home after surgery, but didn't need it. And, have never worn one since, with no problems. Totally continent.
Now, the bedroom was the next concern. I had the desire and feeling immediately after catheter removal, but was not able to get an erection. Doctor had prescribed Viagra (I have never taken it before). I took 50 mg last Tuesday and again Thursday, was able to have a slight erection and did orgasm. It was not very intense and no ejaculate.
Then started taking 100mg/day for this past Sunday and Monday. Surprise, was able to have an erection good enought for intercourse. And, this morning, for the first time since surgery, woke up with an erection.
I am planning to continue using the remaining Viagra pills that I have. When they are gone, I will see how things are working.
I am extremely pleased with the bedroom progress. It has only been 3 weeks since the surgery.
One thing I did notice taking the Viagra was that under florescent lights I saw a blusish haze. Apparantly, this is one of the possible side effects. I didn't worry about it and it was gone the next morning when I awoke.
I have an appointment Monday, 3/27/06 for the one month checkup. Hopefully, everything continues to go well.
Well, I went to my 3/27/06 one month checkup (actually 5 weeks) which consisted of a PSA test and the doctor asking me how I am doing.
I am very happy to say that my PSA result was <0.1 UNDETECTABLE.
Researching this disease I have learned that diet is considered, by some, a form of treatment. All of the books I read agree, more or less, that you are what you eat. And, if you eat "healthy" you will be healthier because of a stronger immune system.
Well, when I was first diagnosed I elected a diet following the primary suggestions of these books. I now eat no butter, mayonaise, red meat or processed foods of any kind. And, have given up alcohol. My diet consists of fruits, vegetables, multi grain breads, beans etc...and water and natural fruit juices for drinks. Smoothies consisting of strawberries and bananas for dessert.
I have found that I am not wanting for any of the old foods. Now, this is probably because I have a wife that loves to cook. And, she spends a great deal of time preparing these foods in a way that makes them very tasty.
How long will I continue eating this way? I don't know but currently have no desire to change. I feel great and am happy with my weight. Also, my wife is like a policewoman monitoring whst I eat.
NOW, HERE IS THE KICKER............................
I have for a long time taken my blood pressure upon awakening and going to sleep. For the longest time, it has been approximately 135-145/75-80. Now when I take it, for example, this morning it was 113/62. And, this measurement has been consistent over the last 6 weeks, or so. I attribute this remarkable decrease to my new diet. When I see this, it actually gives me incentive to continue.
Can't wait to get my cholestrol reading, to see how this has changed.
All in all, I would say so far, so good.
Will post later on the bedroom activity.
Been a few months since I last visited. Recently, had my 6 month PSA and finger test. PSA undetectable and all else well. Doctor said see you in 6 months.
Still following my lifestyle decision of using diet (not for weight control but to boost the immune system) about 98% of the time. In addition to the drop in blood pressure, as mentioned above, I did get the results of my cholesterol test. Cholesterol dropped from 200 to 150....and, good cholesterol went up and the bad went down.
Over the last several months I have had a lot of time in the bedroom.
It's not (yet??) the same as it used to be. Thank goodness for Viagra. I find that it really works. It does take the spontaneity out of it, however. Have to take the pill 1 to 4 hours beforehand. Additionally, some amount of manual manipulation is required for erection. Sometimes, it goes limp and gets frustrating...othertimes great. Interesting though, sometimes, if every goes right, stays harder and longer than I can ever remember happening.
Another thing I've noticed, sometimes, is that during intercourse I get a pain in the side of the penis about 1-1 1/2 inches from the tip. It almost feels as if the 'inside' doesn't want to stretch as much as the 'outside'.
Otherwise, all else is good and will check back periodically.
Just had my 1 year PSA and finger test.
Happy to report PSA undetectable and all else fine. My urologist made an interesting comment to me that some of you using watching waiting may want to consider.
I had an in depth discussion with my urologist concerning my pathology results from last year. One statement on the report bothered me. It said "closest soft tissue margin within .02cm". I said that seems pretty close to the edge. He responded "we caught it just in time". .02 cm is approx 1/100 of an inch. Very close.
My thought was what if I had waited? Would a year later have been too late? He also mentioned that he was no longer doing the radical method with 8 inch scar...rather, he is now referring all his patients, who want surgery, to City of Hope for DaVinci laprascopic method.
After my exam, which included questions about how am I doing...continence, bedroom activity etc....he commented in a low voice, almost as if just talking to himself, as he was leaving the exam room and said "Boy that guy is good". He was referring to my surgeon and the great job he did on me.
I am totally continent, have been since day one. As I reflect back over the past year, there were some disappointments in the bedroom initially and for maybe 6 or 8 months. However, in the last couple months really no disappoinment to speak of.
I have been taking Viagra, which definitely helps me with virtually no side effects. However, on a couple of occasions I was caught off guard with the wife, and everything went well. Erection was firm and lasting.
Also, mentioned this to the urologist. His comment was "Viagra works better for most men over 50 years old." I continue with my lifestyle regarding diet and exercise. I am not fanatical about it today (as I was initially), but have come to the following decisions.
WHEN AT HOME, 98% of the time I eat what everyone agrees are the good foods for this disease...fruits, vegetables, whole grains, beans etc.... I drink a lot of water, pomagranite juice and other fruit juices. I do have a glass or 2 of wine several times a week.
WHEN OUT OF THE HOUSE, I am more relaxed about what I eat and drink. I am still pretty good but might have some red meat and martinis or maybe even a hamburger, if I choose.
Also, I try to exercise. Usually 1/2 hour on the treadmill when I can. I am probably averaging 4 times a week doing this.
I am now very happy with the course of treatment I chose and lifestyle decisions I have made. I do think about this disease every day, probably most of us do. The time of that great stress and making decisions on what treatment, and then following through with the treatment, worrying about family seem very distant, but vivid.
I also feel that prostate cancer has positively impacted my life. I am taking better care of myself and my medical tests have reflected that (lower chloesterol, lower blood pressure).
I again want to thank everyone here who has posted their story. I found this to be a great comfort during those stressful times mostly because I didn't feel alone.
If I can ever be of help to anyone please don't hesitiate to email me.
Will check in again after next PSA test in about 6 months.
Had my summer check-up and results were great.
PSA undetectable and passed the finger test.
There was an additional test. A sonagram where the purpose was to check that the bladder was emptying adequately. The doctor said that sometimes scar tissue develops after surgery, and, even though I may not know my bladder is not emptying, the machine can tell. I passed.
Bedroom activity. A very common concern and here is my take so far.
It is not like it used to be. It could be that I am 1½ years older. However, I see this as a result of this surgery. Not saying it is bad, just different. Fewer nocturnal erections and manual manipulation necessary for erection. Thoughts alone don't work like they used to.
I have found that I am dependant, maybe psychologically, on Viagra. This drug works very well for me. As a result, if there is an inkling that tonight may be a night, I will take a pill.
After 18 months using Viagra here is what I have found.
Firstly, in the beginning give it a chance. Some guys expect it to work the first or second time and it doesn't. This is what I found. However, because it was prescribed for me, I continued to follow the doctor's orders. After the first week it really started to work and it works great.
My original prescription was 50 mg a day for 9 months. Insurance covered eight 100 mg pills a month. So, I cut the 100 mg pills in half and that got me 16 halves per month (50 mg each). Did this for 9 months per doctor's orders. There is a study that says, after surgery, guys who do this have a 700% better chance of potency recovery than guys who do not.
I then started experimenting with 25 mg. I bought a pill cutter on e-Bay that works great. I cut a 100 mg pill into four pieces. Interestingly, I found that the 25 mg works just as well as a 100 mg pill.
The drug company says take it 1 to 4 hours before you expect to have sex. I find that you can take it up to 8 hours before and it still is effective.
Also, if the moment catches me by surprise, I take the 25mg pill and chew it, this seems to allow the body to absorb it faster.
One last comment, I read a study that indicated taking Viagra may reduce the incidence of atherosclerosis resulting in reduced risk of heart attack and stroke!!! Nice side benefit.
Had my winter checkup in January, PSA undetectable and passed finger test. Waiting for that PSA result is still somewhat stressful. Although I feel the result will be fine, you never know.
So, the medical tests say all is good.
Honestly, most of us guys think about sex a lot. However, when a prostate cancer diagnosis hits you, you think about it a whole lot more. Because, the cure to the disease threatens that activity. My experience has been very positive. Sex is still wonderful and all the equipment is functioning very well.
I have been cutting my 100mg Viagra pills into 4 sections, about 25 mg. I told my doctor I have been taking 25 mg a day, every day. Just wanted confirmation that this was ok. He said, "no problem, in fact it is a great way to start the day". He also added that some studies suggest there may be other medical benefits by doing this.
Doctor said see you in 6 months.
Had my July 2008 and January 2009 PSA and finger tests. All went well. PSA is still undetectable.
I continue to appreciate my good fortune in that I appear to be cancer free and experience no continence or potency problems. I know this can change at any time, but continue to have a positive outlook.
It is still, and guess always will be, somewhat stressful everytime I take the PSA blood test. Also, whenever I feel a pain somewhere in the region.... back, leg etc... I tend to immediately think of the cancer. Other than those short stressed periods, I truly appreciate life otherwise and am very happy with my treatment decisions. I realize that the outcome could have been much different with a different decision OR different physician.
Till next time, GOOD LUCK to all with your decisions.
[Robert sent this update through in January 2010, but it was 'lost in space' until he re-sent it in July 2010.]
Had my July 2009 and January 2010 PSA and finger tests. All went well. PSA is still undetectable. Time seems to fly, it has been 4 years since my diagnosis and my initial blog here.
Interesting, at my appointment I commented to the doctor, one more year and it will be 5 years. I thought that was a magic number for cancer survivors. That, one you've "survived" 5 years, odds were supposed to get better regarding the cancer recurring.
He burst my bubble, sadly, and told me that for prostate cancer (and breast cancer), 15 years is the magic number. Apparently, the possibility of reoccurrence for this cancer is different than for other types. [Errr.....the odds DO get better as time passes. There are many studies that show that the chances of 'failure' (however defined) do reduce over time and although there is never a zero sum, the odds keep on improving]
Oh well, that is the new goal. All else is good even though I have pretty much reverted back to my old lifestyle. Eating the same old foods and drink and little exercise. Amazing how a cancer diagnosis can "scare" you into a different lifestyle. And, equally amazing how relaxed you can get as time and the "cancer urgency" passes.
I am still happy with the decisions I have made regarding my choice of cancer treatment. Having the oncologist tell me that the examination of my prostate revealed that the cancer was contained to the prostate was important to me.
Hopefully, that remains true in the future. I wish all of you well and comfort in the decisions you choose. Having traveled this road, I am always happy to talk with anyone wanting to discuss their situation as others have discussed with me. It is always important to remember, and the point of this website, YOU ARE NOT ALONE.
I, again, thank those who helped me along the way and wish I could help more who are concerned and confused.
Till next update, GOOD LUCK to all with your decisions.
Life is wonderful. I am one of the luckiest guys in the world!
Interesting that this statement comes from someone diagnosed with prostate cancer. Here I am now 5 ½ years after original diagnosis. Just visited my doctor . He and the test results say I am cancer free.
I think back to that day when I was told "I had cancer" and feeling like it was the end of the world. That memory is vivid yet distant. I feel comfortable now and confident that all will continue to be good. It is true that time heals all wounds. So, mentally I am upbeat and appreciate life more now because of the cancer "scare". Of course I recognize that reoccurrence can occur but don't dwell on it like I used too. I can also get hit by a car. So, I have my regular checkups with the urologist and look both ways when I cross the street.
I FEEL GREAT.
Physically, I feel wonderful. PSA is 0 and finger test negative. I have never had any continence problems.
Sex is still getting better. Kind of interesting actually. Most opinions on the matter say it takes about 2 years to regain full potency. This is probably more of an individual experience. But, my experience is that it is continuing to get better even 5 years later. Initially, the nerve disruption caused some problems, nothing serious. Viagra was a great help for years. I have not taken Viagra now for a year and all is good. I really appreciate those natural nocturnal "woodies". Also, when the opportunity "arises" erection is strong enough for penetration.
I understand that not all of us have the same positive outcome. So, my story tells you what it is possible. You need to select the right doctor for your particular procedure. Do your due diligence seriously and a little luck can't hurt.
I, again, thank those who helped me along the way and wish I could help more who are concerned and confused.
Till next update, GOOD LUCK to all with your decisions.
Time flies. Another big 0 on the PSA test.
Here I am now 6 ½ years after original diagnosis. Just visited my doctor. He and the test results again say I am cancer free. (I never tire of hearing this).
His prognosis for me is better than excellent. In fact, he puts me at the head of the class.
Based upon my PSA, gleason of the biopsy sample and then biopsy of the prostate after removal with no increase in gleason score and other considerations particular to me... he does not think I will EVER have a problem (my fingers are crossed).
He has changed my schedule from seeing him twice a year to once now.
No continence issues and the wife and I still play in the bedroom.
Have not used VIAGRA for quite a while now.
My doctor has started taking all patients weight and blood pressure.
Seems that my blood pressure might be a little on the high side.
So, this will be my next project.
Might have to revisit my food intake and exercise as I did back in April 2006 (above) but now for a different reason.
Till next update, GOOD LUCK to all with your decisions.
Well another year has passed. I just visited my doctor for the annual exam.
PSA came in at 0. (never tire of seeing this).
The doctor made a point to say that I should not dwell on the possibility of a recurrence. In fact, don't even think about it. He felt that at this point, after 7-1/2 years, although possible, he put the odds at miniscule. Good to hear and good luck to all.
The Psychology of a PSA Result
My last 15 PSA tests (over 8 years) have always come back with the number 0.01.
All of a sudden my 16th PSA result says 0.02.
The doctor says nothing to worry about.
I hear him saying nothing to worry about ..yet.
My research says don't worry about it till it hits 0.2 and that a lab result could be a difference in lab methodology.
My concern is that every man who has had a recurrence has gone through that 0.02 number.
So, just when I was getting comfortable with this situation I now have something else to worry about.
Just the way my mind works.
Doctor says come back in a year for the next PSA test.
Will keep in touch.
Ten (10) Year Check Up
Just had the big 10 year and PSA came in at 0.
Two things I notice as time passes;
First, A good result never gets old and
Second, I find myself more anxious waiting for each test result
Not sure why.
I do know though having had this cancer experience has certainly put my priorities in perspective..
Bad day at work, no problem.
Had an argument with someone, it was just an argument.
Lost my key, or phone, or wallet, yeah it is a hassle.
But what I find really comforting in all these situations is that I still have the big ZERO PSA.
My urologist says I don't need to see him anymore. Tells me to have my primary just run the PSA now.
Will keep in touch.
The best to you all.
Another year has passed.
Recently visited the doctor for my annual PSA test.
Very happy to report another 0.
Otherwise, all else the same.
Robert's e-mail address is: firstname.lastname@example.org