THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.
I was diagnosed with prostate cancer in December of 2013. I'm a healthy white male with no other medical issues, current age is 53.
Met with a Urologist who has suggested surgery to remove it, of course. He did suggest I speak with a radiation doc and get a second opinion of his suggestions as well. Said surgery was the best course of action and felt he was more than capable since he has performed more than 250 using the daVinci method. Said he had excellent result with e.d. and incontinence, but had no supporting documentation.
I had two out 12 cores test positive for cancer. 5% of one core had a gleason 3+3=6 and another core had a gleason of 3+4=7. 10% of the second core was involved. No additional scans are being suggested since my stage was put at T1C.
There doesn't seem to be information that indicates a "best" treatment option. I'm meeting with a doc at Northwestern University who only performs the "open" procedure and seems to indicate that daVinci is an inferior approach. My original urologist indicated the exact opposity; that daVinci is superior and the old style open method was only used by docs that don't want to change with the times.
Looking for a radiation doc to get his opinion based upon my situation.
Given a gleason score of 7, everything I'm reading seems to indicate that I'm not a good candicate for watchful waiting.
I'm looking for the following:
- Suggestions of a Urologist in the Chicago area that have performed 1,000 or more surgeries. (open or daVinci)
- Suggestions for a Radialogist in the Chicago area. Again, looking for someone who has extensive experience with prostate cancer.
- Any factual evidence that will help me with this decision of which approach to consider.
- Anything that you think I should consider.
I like the idea of radiation or seed which will not leave me incontinent or impotent, at least not in the short term. On the other hand, I like the idea of having the cancer removed from my body but don't like the chance of being impotent and/or incontinent.
I'm trying to navigate without a map and will greatly appreciate any help or suggestions.
It is March 8th, 2014 and I've decided to upate my story. I have chosen to have the radical prostatectomy via the robotic procedure.
I chose this after visiing 3 surgeons, 2 radiation doctors and 1 doctor that specialized in brachytherapy. All surgeons recommended surgery based uopn my age, gleason and staging. Both radiation doctors recommended surgery based upon the sampe factors. I was perplexed, but releived that they told me surgery first, then if needed, radiation would be a good back up plan if the cancer had spread. The brachytherapy doctor recommended seeds but didn't seem to have answers that satisifed me if the cancer came back.
Finally, the big decision was to I choose robotic or the open style. I met with a highly renowned doctor in Chicago who has performed thousands of open surgeries and believes in his heart that this is the best approach. I also met with a doctor that trained under him and performed hundreds of open style surgeries but has switched to the robotic. He has performed neraly 400 robotic and fully believes it is superior.
So what's a man to do when the meical community can't agree? Both doctors are top notch, both work at cancer centers and both specialize in the prostate; all good things.
I looked at the after care for each program and chose the one with a specialized team in place to focus on me after the operation. They have a male nurse who specializes in working with patients after surgery for impotence. They have a resouce library open to their patients. In fact, I left my initial appointment with several books relating to surgery, recovery, and sexuality after surgery. For me, this was the difference maker.
Bottom line, we are navigating this on our own with the help of the medical community. The choice is an individual choice that we must live with after making the decision.
My surgery is scheduled for the 26th of this month. The anguish and mental strain of the wait is persistent. The wait once I decided was 7 weeks which seems like an eternity. I am taking medication for anxiety and depression. I don't see much written on this but the stigma has to be removed. The are real for me and I needed to seek help as I'm trying to live a normal life on a daily basis. I will update after surgery to share my experience.
I am fearful of the two common side effects, but understand this is out of my hands. The thought of a dry ejaculation makes no sense to me, but I'm hopeful that my recovery is of the type that allows me to report on that as well.
Last note for now: it took me a while to start sharing the news with friend and co-workers. I believe that a mistake, for me. The support or many is heart warming. Don't worry about the others that don't seem to know how to react or show no signs that you ever told them to being with; everyone reacts differently. Concentrate on the positive, hope for the best once your decison is made and don't forget about the power of prayer.
My original surgery was March 21st 2014, here is my update.
The first 6 months were tough to navigate. while the incontinence was minimal it was still there and I had a certain fear factor that it would worsen. I kept my follow up appointments with the urologist and everything was going well. My PSA level is undetectable wHicham is exactly what I have prayed for. I continue to have my blood drawn quarterly and continue to see my urologist.
Physically, my recovery was extended due to the fact that I had rotator cuff surgery 30 days after the DaVinci surgery. My job is not physical and therefore I was able to start working from home within 10 days of surgery.
Having a catheter in after surgery was no fun but it was fairly easy to deal with. Unfortunately I did have to have another catheter put in due to the fact that I could not evacuate. This was very stressful and quite frankly was a low point of after the surgery. I quickly saw that the new catheter was not as big a deal as I thought and came to accept it for a short while. Once it was removed everything was fine.
The real stress was dealing with the erectile dysfunction. The group I chose has a male nurse dedicated to ED Follow up. It's uncomfortable to speak with somebody about these topics but he was very professional and put me at ease. I met with him regularly and followed his instructions.
It's very frustrating dealing with erectile dysfunction. With the help of the ED specialist and my "work" at home things have progressed.
I followed his instructions and suggest the same for anyone. You must work with it like a teenager. The pills didn't do enough for me and I was give a vacuum device to pull blood into the penis. It's hard to write about but even harder to live with. There's a certain stigma about mastrabation but I had to get past that, it wasn't easy.
I am able to get erections strong enough for intercourse without the pump but I do take cialis. Things aren't perfect but they weren't perfect for theach last 10 years or more.
I am fortunate to have no detectable PSA;. I am grateful for my surgeon Dr. Brian Helfand and the care I received at the Glenbrook Hospital in Glenview, IL. Dr. Helfand's staff is incredible.
I hope this update sheds some light on my story and I am open to being contacted.
If you are reading this your life me feel upside down. Hang in there, do your homework and make the best decision you can, for you.
Don't forget the power of prayer.
Dave's e-mail address is: egv.dave AT gmail.com (replace "AT" with "@")
NOTE: Dave has not updated his story for more than 15 months, so you may not receive any response from him.
