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...
Victor's e-mail address is: firstname.lastname@example.org