It's something that happens to other people, not me. Even with a PSA of 4.27 the denial was strong. This PSA was one that resulted from a redo of an annual physical PSA in April 2015. Then it was 4.08. The redo in October 2015 came back as 4.27. A visit to a Urologist was recommended so I chose to see one just before the holidays in mid December 2015. We talked about family history (father had PC in his 80s and mother and sister had breast cancer) and I discovered that there is a correlation between sibling breast cancer and PC. The Urologist recommended a biopsy of the prostate which was scheduled after the holidays in early January. My wife accompanied me to the procedure because there is no way no how you are driving home on your own afterwards. Not a hugely painful experience, but with only a local anesthetic there was some pain involved. 12 samples were taken. Now the wait. Up until this point I am still in denial and its still something that happens to other people.
10 days later I receive a message on my voice mail from my doctor. "...your biopsy came back showing cancer and you need to make an appointment with me so we can talk about managing this...". Cold, hard, slap in the face.
The denial was gone and the ride on the emotional roller coaster began. I ran the entire emotional gambit. Depression, self pity, confusion, anger and much more. I blamed God, my father, my mother and many other people. Trying to make sure that my family was going to be taken care of is, what I believe, jerked me back in to reality and I told myself that I needed to get busy and take care of this.
I made the next appointment with my Urologist for early February and we sat down to discuss options. We discussed treatments such as surgery, HIFU, radiation, hormone therapy, active surveillance and how each one pertained to my age, life style and quality of life. I was very interested in HIFU at first but after reading more and more about it I was a bit turned off from it because of the recurrence rates and the fact that it was mostly out of pocket. Money was not and should not be a factor if at all possible. Even with a Gleason 7, active surveillance was a consideration but this does not eliminate the cancer. I wanted it gone. Radiation was discussed and eliminated as an option. The reasoning behind this was due to the fact that at my "young" age, radiation can lead to more problems that could affect my immediate quality of life. Radiation can be very destructive even with the new focused radiation procedures. I was also told that if I chose radiation then wanted surgery afterwards the chances of a successful surgery are greatly diminished. I was down to holding surgery in my hands but decided that I would seek out a second opinion.
Up until now I had been dealing strictly with the Veterans Administration in Prescott, AZ. I know there has been a lot of negative press concerning the VA as of lately but I have to mention that they have been extraordinary in helping me go through this. More on the VA later.
My wife and I combed the Phoenix, AZ area for a Urologist that we could get a fresh opinion from. We found a very nice doctor in Scottsdale, AZ so we made an appointment to see him. He, basically, reinforced what the VA Urologist had told us and the wife and I really got to like him in the short time we were with him. So I got down to it. Almost like a job interview. He told us that he performs a procedure known as a "Nerve Sparing, Robotic Assisted, Radical Prostatectomy". The key here is "Nerve Sparing". I asked him how many procedures he had performed and he stated that he stopped counting after 250 but he does 30 - 50 per year. He then leaned forward and looked me straight in the eyes and said "I'm really good at it too". That won me over. I scheduled surgery for March 29, 2016.
Nerve Sparing. Huge! The wife and I are still sexually active. Under the nerve sparing procedure the surgeon is able to gently lift the nerves that help with erections, from the prostate, prior to its removal. There is a lot of literature out there on this and it is a blessing. Now of course it all depends on the individual and how far advanced the cancer is. Many factors involved.
March 29, 2016. Long story short, in and out in 3 hours. Single night stay in the hospital and home to recover. No driving for 1 week, no strenuous activity or lifting for one month. Post surgery pathology report indicated Gleason 7 with 5% involvement. The best part was that the cancer did not invade in to the margins of the prostate and was entirely encapsulated in the prostate. So it appears as though I may be cancer free. First post surgery PSA in May.
Side note: Was getting a little playful with the wife a couple days ago and there was a stirring down below. Things are already starting to come back. I do have some incontinence but nothing I can't deal with. I have so much to be thankful for and am a bit ashamed of how I was at the beginning of this journey. It was a huge scare and though nothing in life is guaranteed (except death and taxes) I thank God and my family for this second chance. To my doctors and the Veterans Administration I will forever be in your debt.
I will try and update this on a regular basis and please, if you have any questions, please, please, please email me.
Thought I would pass along how things have been going during the recovery phase. It is a slow process but I am noticing improvements. I saw my doctor in May for my post surgery PSA screening and it all came back as undetectable. Good news! I was given a Kegel exercise routine and side effects were discussed. These side effects being ED and urinary incontinence. I have not had a full erection since my surgery but there has been improvement. I was placed on 5mg of Cialis, 1/day, but still no full erection. I can achieve orgasm, dry orgasm, but orgasm just the same. The distressing part for me is the incontinence. Not so distressing though. It is improving. The most difficult part was having to give up coffee. It made me pee like a race horse. As far as other libations go, I have experimented with different ones and have discovered that an occasional bourbon on the rocks is what I found to be best tolerated. An occasional beer works well too. Wine didn't fare so well and I loved my Robert Mondavi cabernet.
As far as protective wear goes, I started with the Depends Fit-Flex underwear but discovered that they have a tendency to fall apart. So I went to the VA and they set me up with a prescription for Attends underwear. These work well. Now, my incontinence is not so bad that I soak the underwear. I change twice in a 24 hour period more for hygiene than for anything else. My incontinence has been reduced to the point of occasional drips and an occasional dribble. Manageable. I have recently started experimenting with pads that you adhere to your underwear. Only good if you wear briefs or boxer-briefs.
I do understand that to the newly initiated to this malady, me writing about these things as openly as I do may sound some what shocking. However, when I take in to account the alternative...For me every improvement however slight is a milestone. I celebrate it as I now celebrate my life to, it's fullest. I have a wonderful wife and 3 wonderful kids who I am not done with. Though not a gramps yet I fully intend to stick around until I can become one, if God allows me. Though I am not at where I want to be when it comes to the ED and incontinence I am to the point where I can be active and move around freely. I love to hike the back country and am able to do so. I love to travel and am able to do so. I recently retired from my government job. It didn't last long though. I had to get another job because I can't not work. The point being, I was able to do so. The side effects of the surgery are no longer debilitating as they were at the beginning. It does get better. Just give it time.
Ok...Coming up on one year since my surgery and I just had my one year PSA screening with my Urologist. Undetectable still. We now go from once a quarter screening to biannual. The incontinence has become nearly non existent. I still wear the padded underwear to sleep in and I really don't know why. I guess its a mind thing. During the day I adhere Depends underwear shields to my boxer briefs and one usually lasts the day unless I exercise then its 2 a day. Again their use is more a mind thing for me than actually needing them. I am now able to indulge in my vices with little to no side effect. Coffee is back. As are wine and beer. And yes my bourbon on the rocks too. My diet has returned to its pre PC routine. I have always loved spicy foods but after my surgery they caused my bladder to have fits. I am now able to indulge in dishes like enchiladas, jambalaya, curry...etc. Now, I still pee a lot. But the key is that I can hold it until I find a restroom. I have not had an accident due to not being able to hold it.
Now the important part. I am happy to report that the little lady and I are now sexually active again. As I reported in September, erections were only partial and it remained that way until about January. I started to experience full erections but they would not stay but for about 20-30 seconds. That soon became longer then even longer and as of now the wife and I are able to once again dance together. Maybe it could have happened sooner because my Urologist offered me mechanical devices (pumps) and injections during our quarterly visits. But I told him I didn't want to go there yet. Time! You have to give it time!
Did I think about giving up during this year long recovery process? Oh yeah. Did I believe that peeing on myself and a sexless marriage was my new reality? More than once. Did I talk to God. A lot. And I'm not a very religious man. Your mind does very interesting things to you when you find yourself in a predicament such as Prostate Cancer and the recovery from it. Am I content with my progress thus far? Considering where I was at the start of this journey, I am very content. Will I continue to visit my Urologist? Biannually for one year, then annually for the rest of my life.
As I stated before, time is your best friend. Do what your doctor tells you. My doctor jumped all over me because when he asked me if I was doing my Kegel exercises I told him occasionally. I was suppose to be doing them religiously on a daily basis. Though my results may differ from yours, you have to have faith. Your results may come to fruition sooner than mine or later than mine. Just remember what the alternative is if you do nothing.
I am happy to say that I quit that part time job that I took and decided to fully retire. The wife and I love to travel so we save our nickels and dimes and do as much of that as we can. We have plans for Hawaii in July, and are also working on a Macchu Pichu trip next year. And you know what? I can do it without worry. PC doesn't have to be a debilitating disease.
Email me if you want any info or if you just want to vent. Sometimes venting to a complete stranger is all you need. Good luck to you on your journey.
More to come...
Hello there everyone. Hard to believe it has been another year. My last visit with my surgical Urologist was in October 2017. Had an argument with his office staff over insurance and they refused to let me see him. So we have parted company. I did get the results of my PSA though and they were undetectable yet again. I have now gone back to my default provider at the Veterans Administration, whom I will be seeing again in April 2018 for a general physical with PSA testing.
I am still retired and doing very well. The peel and stick pads are nothing more than a faint memory now. I did use one back in February because we went to an opera and I didn't know how much time it would be from Act to Act. It was never an issue. I have an occasional leak (1 drop) when I strain to much, but other than that all is good. I am leading a normal and healthy life. I did have surgery in May 2017 but it was for a totally unrelated medical issue. I have started entering 5K walk/run races and have found them to be quite refreshing. My knees don't though. I still walk 3 miles a day, 4-6 days a week. The wife and I love going to Hawaii and did so in September 2017. We did lots of hiking on the Big Island and had a lot of fun. I have not and will not be held hostage by this disease. Before parting ways with my Urologist he gave me a clean bill of health with the disclaimer that there was always the faint chance that there might be some cancer cell floating around out there.
I am now pushing 63. I was 60 when it was detected in me. This has been an extremely eye opening education for me. I learned so very much about me. My mind, my body, my abilities and my desires. I chose not to go the way of eating nothing but things that make you "yuck", or cutting out any and all vices. I still love to eat Mexican food, drink my beer, wine or liquor. In moderation of course. I am a little overweight, but working on it, but more than anything I am enjoying my life. I am not a religious man but I talk to God. One on one. I take huge amounts of pride in my, now grown children and I hope for the day to be called grandpa. I have been shown so much. Things that were always there but I never looked at.
This disease will eat you alive mentally if you let it. I chose not to. You should do the same. Face it head on because there are no ways around it. Deal with it and deal with it now so you can get on with your life. You have everything to live for. Email me if you would like. I'm here. Hell I'm retired.
Well, here I am. A little over 3 years have passed since my surgery. The biggest changes in my life that have occurred are that I fully retired and we have moved to Hawaii. My Prostate Cancer is a faint memory but I remain aware that there is always the outside chance that my cancer could reappear somewhere else. That being said, life goes on...I am still able to have sex with the help of the little blue pill. Now I'm not saying this is a result of the surgery. It could be because I am now 64 years old and this is just the start of those normal life changes. I also experience some very mild incontinence but nothing that could remotely be considered something that interferes with my everyday routine.
Hawaii is beautiful. I've been trying to get back here since I was stationed here in the 1970s. Some 40 years later here I am, enjoying the activities that one is able to enjoy here in Hawaii. Hiking, swimming, kayaking, stand up paddle board etc., etc. The point I am making is that Prostate Cancer is not a death sentence. Yes it's going to scare the crap out of you when you first find out, but you face it head on and get on with it. In this day and age you have options. Those options vary depending on your age. I am no body special that had different options than anyone else. I made a choice based on factors that were important to me. I was done having kids (well, my wife was), I wanted to remain physically active, I wanted to remain sexually active and I wanted the cancer out/gone. Surgery was my choice. I have absolutely no regrets. Hell, I'm living the good life in Hawaii. Don't let this disease keep you from living your good life.
I remain available if you want to chew the fat. Good luck to you! I mean that.
It has now been ~4 years since being diagnosed with prostate cancer. I am now 65 years old and many things have changed in my life. I have fully retired and the wife and I chucked it all and moved to the Hawaiian Islands. Oahu, to be more precise. I have made no drastic changes as far as leading a more healthy life. I still have my evening drinks and my morning coffee. I still eat those things that I enjoy and I am, basically just enjoying life. If I want to be lazy I am. If I want to be energetic I do. Far back in the far recesses of my mind I do wonder if the cancer will ever appear again in a different form but I do not lose sleep over it. You reach a point in your life where you become aware that you have far less years in front of you than you have years behind you. Reality. Normal feelings even if one had never been hit with the cancer bug. I am lucky to the extent that I have longevity in my family. Into the 90s. I am hopeful that this will be my case as well. Prostate cancer is by no means a death sentence. At the initial diagnosis it, most definitely, scares the ever lovin' crap out of you but as time progresses you learn that it was all for nothing. The ED that I experience is overcome with Viagra. Works rather well (Remember, I'm 65). The incontinence I mentioned is nothing. Easily handled with just wearing regular underwear. A drip every great once in awhile. I still go commando from time to time. Other than dry orgasms, your sex life need not change, depending on your stage diagnosis.
Now the one negative that I noticed that really hasn't made that much of a difference. There is a shortening from those who chose a radical prostatectomy. I lost about an inch. You cut out the prostate of about the size of walnut, and you also cut out some of your urethra. You get a shortening to compensate for removal of that section. No biggy. For those that are circumcised it's been described as developing a second foreskin because it tucks back in on itself from time to time. Again, not that big of a deal. Just thought I would mention it.
I do make it a point to get the PSA blood test done once a year along with an annual physical. Just to keep track of everything. Just treat it as you would like getting a colonoscopy or any other procedure you would get as part of an annual physical. Awareness helps and puts your mind at ease.
Again, prostate cancer is not a death sentence. If you are young consider surgery. More elderly, 60s, 70s or 80s, or done having kids, maybe something less invasive. All my own opinion of course. I am glad I did the total removal. I have never had second thoughts about it. I love my life right now. I planned for something like this for many years, even through the prostate cancer and I did not allow the cancer to derail me from those plans.
To those who find themselves in my shoes and are worried about the state of their life make a choice, stick to that choice, plan your life and do well. God bless and push forward...
6 years and going strong. Not looking back but still have that far off voice that reminds me that cancer could remanifest itself in some form sometime in my future. Still living in Hawaii and waiting for my wife to retire so we can travel even more. I do have other medical problems to contend with but not prostate cancer related. Those things that sneak up on us as we age. Aches and pains and the likes. I am leading a normal life style at 67 years old. Sometimes sedentary, sometimes get up and go. The wife and I love to hike here in Hawaii. There is a lot of it. We also have our own kayaks and set out once in a while for a nice paddle. Have made some wonderful friends here in Hawaii and we love to get together for some shore fishing. The wife and I still enjoy a normal sex life with the help of the blue pill. I can still achieve an erection but it's the maintaining that's a problem. Hence the blue pill help. Hey I'm 2-1/2 years shy of 70. I think I'm doing pretty good. I love my life and those around me and I hope to be around, hopefully, for at least a couple of more decades, if the good Lord sees to bless me.
OK. Let's talk about you. Your feelings of "whoa". Your "end of the world". That feeling you have that you have just been handed a death sentence. NO! STOP! What you have to do is STOP thinking about the end and START thinking about the beginning and the rest of your life. There is a lot to be said about attitude. You have to live your life to the best of your ability whilst incorporating your treatment plan into it. There is nothing that says that you have to become a shut in or a feeble has been. You have people that YOU still have to take care of. Your chances of pulling through this event, yes event, are real good. If you're at the point where choices have to be made, then by damn, make those choices and get on with it. If you get tired then rest. If you feel froggy then, damnit, jump! But what ever you do don't just lay down and give up. Please enjoy life. It was given to you to enjoy. We have all been given obstacles in our lives. It is up to each of us to push through those obstacles or find a work around. Prostate cancer is another battle. Fight it with dignity but keep living your life. A fun life...
I am here for anyone that wants to just bull sh*t about it...
Aloha nui loa. In, about, one month it will be 8 years since my prostate surgery. These 8 years later has left me with zero regrets. I turn 69 this year and have been blessed. To sum up, I visited Hawaii many times after my surgery. So much so that I got sick of visiting and we just moved here. We have traveled some since moving here. We traveled to Scotland in Sept, '23 for a 3 week self guided train tour of the country and Fairbanks, Alaska in January '23 to see the Auro Borealis (Northern Lights). We have traveled to Florida and Virginia and a number of occasions and we even jump from island to island here in Hawaii on weekend getaways. We have 3-4 off island trips scheduled this year limited, only, by my wife's PTO. She still works but we're working on that.
I guess what I'm trying to say is that I HAD prostate cancer. I dealt with it and moved on. I continued to live my life, maybe with greater enjoyment than had I not been diagnosed with it. I can't say for sure. You can spend the rest of your life, after a diagnosis, with your head in your hands, with a "whoa is me" attitude or you can deal with it and move on. Yes, just as you would with any obstacle. Everyones outcome will be different. But you will deal with it. As I previously stated, in other updates, your way in approaching you prostate cancer may differ than my way. Your choices in treatment may differ. What ever way you choose just do it. Do it and enjoy your life. Prostate cancer is NOT a death sentence...
BREAK: it's odd that I'm sitting here watching the Secretary of Defense in a news conference talking about his prostate cancer and how beatable it is. Food for thought...
...Not a death sentence. I once read that nobody on this earth is going to get out of here alive. For me there are, still, to many friends to make and to many hands to shake. There are still to many places I have yet to see and in the time I have left I doubt I will see them all. But I'm sure as hell going to try. I still want to live long enough to see grandchildren but my kids are taking their sweet ass time.
Prostate Cancer. Not a death sentence. Everyone has a choice how they deal with it. Move on...
Please email me if you have any questions...
Victor's e-mail address is: grcavic AT gmail.com (replace "AT" with "@")