Just got diagnosed and still numb... The more I read, the more unsure I am on what to do for treatment. I have been given two options - surgery or radiation. Neither one is very appealing but I guess it is what it is...
After meeting with several doctors, I found myself most comfortable with Dr. Tuerk at St. Elizabeth's Medical Center in Brighton, MA. Dr. Tuerk seems to have the most experience with the robotic assisted surgery and he made me feel at ease with his level of skill in dealing with my particular form of cancer. It was really a toss up between Dr. Tuerk and Dr. McGovern at Mass General whom I was also very comfortable with. However, Dr. McGovern performs normal open surgery (I'm convinced that he is the best in this type of surgery had I decided to choose that method) vs Dr. Tuerk who utilizes the da Vinci Surgical System. After I found a YouTube video of Dr. Tuerk performing the actual surgery, I was convinced that the robotic assisted laparoscopic prostatectomy was the direction that I should take. I found his surgery to be very meticulously performed with careful consideration and precision throughout. I have scheduled my surgery for July 27, 2017, giving me time for a all family vacation leading up to my surgery.
Two days ago, on 7/27/17, I had robotic assisted laparoscopic radical prostatectomy surgery (nerve preservation technique) performed along with bilateral lymph node dissection. It was performed by Dr. Ingolf Tuerk at St. Elizabeth's Medical Center. My surgery was scheduled for 11:30 am but I had to come in at 9:30 for pre-op prep. Dr. Tuerk came in prior to surgery to go over, once again, what would be happening during surgery and post-surgery. He was very reassuring and confident that we would have a positive outcome. I also met with the anesthesiologist who explained that he would be giving me a sedative for the ride down to the operating room. The last thing I remember is being pushed down the hallway in my bed heading to surgery without any anxiety at all...
The actual surgery lasted about 3 hours with another 2 hours in recovery. I remember waking up in recovery with several doctors and/or nurses around me asking how I felt. I remember being half out of it but when they tried to move me I felt some extreme abdominal pain. They immediately gave me two shots some type of local pain blocker, one on each side of my abdomen, which quickly took all of the pain away. The next thing that I remember is being wheeled up to my room and being moved into my bed with very little (manageable) pain. My wife came in and shortly thereafter the doctor came in and told us that the surgery went extremely well. Dr. Tuerk told us that he felt that everything looked contained to him but, of course, the lab reports would tell us more in another week when they re-stage the prostate cancer based on what they find in the prostate and lymph nodes that he removed. As far as nerve preservation, he felt confident that he saved "most" of the nerves but also cautioned me that there was some scarring present in or at the some of the nerve which made it difficult for him to stretch it away from the prostate. So now it's wait and see...
I was very tired from the surgery and after my wife left all I wanted to do was sleep. However, they place these automatically inflatable things on your legs in order to help prevent blood clots which inflate/deflate repeatedly every 60 seconds which is pretty annoying when you're trying to sleep. The nurses also come in frequently to check on you and take readings so don't expect a lot of "good" sleep the night after surgery if my experience is typical.
At some point when I was brought to my room, I was asked to inhale from a tube in some type of plastic breathing apparatus that measured the amount of inhale. Unfortunately, I either wasn't told or didn't hear that I needed to repeat this breathing exercise 10-12 times per hour so I never did.
When I woke up the next day after surgery, it was all about getting out of bed and walking. I definitely had pain in my abdomen but it wasn't too bad so I was able to walk around as needed. Next I got trained on how to hook up and use the (portable and night) catheters and how to give myself shots in the stomach of some type of blood thinner to further guard against clotting.
I thought everything was going very well and as expected and I was in the process of completing all of my discharge paperwork when I suddenly had excruciating pain in my chest and I felt like I couldn't breath as with every breath the pain worsened. The nurse called the doctors who quickly rushed in. The pain subsided until they wanted to do some tests on me and asked me to lie on the bed. The pain immediately intensified again until I sat up/stood up. It seemed that every time I sat or tried to lay down the pain would start all over again. One of the young residents told me it was just gas that was trapped from the surgery. He also said it could be "skeletal" from the awkward way in which my chest was strapped down during surgery. With my wife now in the room and seeing the extreme pain that I was in with each occurrence, she did not want me discharged until this issue was resolved. The resident called Dr. Tuerk who advised to make sure it was nothing else by having a CAT scan. Long story short, the CAT scans showed nothing unusual and I was told that it was either CO2 gas pain that had settled into my chest or reflective pain from the surgery. Either way, I can tell you that this was the most unexpected and most discouraging (..and painful) part of the entire surgery to date. My wife though I was have a heart attack! It was a rough trip home in the car and I was finally able to get myself into bed without the extreme chest pain.
Day two after the surgery and I FINALLY passed gas (no bowel movement yet though)!! This was a very exciting moment(s) as I have feeling extremely bloated!!! Got to get all that bloat out of me in order to get more comfortable... Let the healing process begin. Seem to be gaining some strength.
It was a great day today, Monday 7/31/17. I had my first post-surgery bowel movement! May not sound exciting to those who haven't gone through this surgery before but, believe me, it will make you very happy! More importantly, I just received a phone call from the doctor who received the final lab reports. The news could not have been better... the cancer was confined to the prostate and all lymph nodes were negative for cancer. He said he'll see me in three months (after I get the catheter removed on Thursday) for follow up!! Hallelujah!!! :)
A week ago Friday (2 weeks post surgery), I suddenly had a bad pain that shot from my groin to my buttocks. I called Dr. Tuerks office and they sent me immediately to the closest hospital emergency room (Newton-Wellesley Hospital) for fear that it may be a blood clot. (By the way, they give anti-blood clot medication that you will have to inject into your abdomen once a day for the first 10 days after surgery. Luckily, my wife did it for me but it really isn't a big deal.) They did an ultrasound and found no clots. The doctor believes that it was caused by delayed inflammation from the surgery that was pressing on a nerve that caused my pain and sensation of numbness in the groin. Although the pain has lessened - its more of an irritation now - the numbness is still there. He said it would likely go away within 2-3 weeks.
As far as continence, I thought I was doing quite well with absolutely no leakage at night and just a bit during the daytime (some days worse and better than others). I did have a set back the other night but I think it may have been that I had a couple drinks so I'll need to be more careful with that going forward. No night issues since... I'm now three weeks out of surgery and feel like I've regained most of my control. Kegels are VERY important to strengthen the muscles that will give you back that control - start those now if you haven't already. The continence thing is very frustrating but I feel like it is just going to take time. It is definitely improving each day!
When I had my 3 month check up with Dr. Tuerk's office at the end of October, I was very disappointed to find that I was met with one of his "underling" doctors in training. I had concerns about the sustained numbness and pain following any walking activities. He basically told me that it would be a full year before I would feel normal again... wrong answer!
After my annual physical in January I explained my numbnesss and pain issues and it was suggested that I seek a second opinion. I agreed and just met with Dr. Lamont, Chief of Urology at Newton-Wellesley Hospital. Although robotic assisted surgery is not his specialty, he was in agreement that my pain was not normal healing. This long after surgery, it was his opinion that I should not still be in any pain. Had a new PSA test done and a set of X-rays... waiting for the results.
Just went on a walk with my daughter and dogs... got about a mile and the pain started up in my groin. I barely made it home and took some vicadine... Need to figure this thing out.
I apologize for not keeping everyone up to date this past year. It has definitely been an eventful year. The good news is that I am still cancer free! The bad news is that, as a consequence of my radical prostatectomy, it was determined that I had two large collections of lymphatic fluid (lymphoceles) on both sides of my groin. The one on my left side was apparently pressing against a nerve that was causing some pretty severe pain.
I had never been told that pelvic lymphoceles are well documented complications following radical prostatectomy with incidence up to 27%. Had I been told this, I would not have elected to have this type of surgery and would have instead elected to have regular open surgery. I also would not recommend Dr. Ingolf Tuerk at St. Elizabeth's Medical Center. He refused to see me after being sent my CAT scans showing the lymphoceles and being told of my pain.
My primary care doctor set up an appointment Dr. Edgar Casado at Newton-Wellesley Hospital to have the lymphocele causing my pain surgically drained in late October 2018. The procedure was done and a tube was inserted through my groin and into the lymphocele. The tube and a collection catheter was left in me in order to continue to drain the fluid. I was instructed that a visiting nurse would see my daily to flush the catheter and cleanse the area. The nurse came the first night and asked for the syringes required to do the flushing. The doctor forgot to give me any! She was unable to flush the catheter. She called the doctor and he ordered a supply through CVS but they were on backorder. When it finally arrived days later it was the wrong size. By the time we received the correct supplies, it had already been nearly a week without being flushed. I was still in pain but though it might just be my "normal" pain.
After a week and a half fluid was still draining out, I made an appointment with Dr. Casado to make sure things were OK. The fluid coming out of me was very yellowish and my wife was concerned that there was infection. We purposely did not empty the catheter so that he could see the fluid and potentially test it. Not only was Dr. Casado not concerned, he proceeded to empty out the fluid into the trash! He then flushed out my catheter with saline. My wife insisted that I had an infection so he then proceeded to try an extract some sample fluid that he had just cleaned away with saline. Needless to say, the test came back clean with no infection.
A few days later, I was in such pain that I nearly fainted when I got out of bed.I called Dr. Casado and was instructed to go to the emergency room. I was immediately checked into the hospital and it was determined that I had developed sepsis. I spent 8 days, Nov 8-15, in the hospital on heavy antibiotic IVs. On Dec 4th, alcohol was injected into the lymphocele in an attempt to seal it from continued drainage. It seems to have finally worked!
Although the severe pain is gone, I still have some discomfort from time to time in my groin. In addition, the septic trauma caused weakness in my left leg (needed to use my arms to pull my leg into the car) as well as "drop foot" (no feeling on the upper inside portion of my foot and less muscle control). I spent several weeks in physical therapy to help strengthen these areas. My left leg is now stronger (can get in the car on its own now) and better contol of my foot but it is still completely numb.
All in all, I feel pretty back to "normal" finally! No cancer and life is great!!
Just received my zero PSA report after my annual physical. Super happy to report that I am 2.5 years cancer free! I feel great!! :)
Just received my PST results from my annual physical and I am happy to report that my PSA was undetectable. Cancer free since my surgery in 2017. No pain or any other symptoms to report.
It's now been over 5 years since my prostate surgery and I'm feeling great!
It has been 6 and a half years since my surgery and I feel better than ever. Thankfully, all of my early post-surgery issues are in the rearview mirror. I'm cancer free and loving life!
Ed's e-mail address is: burkharted AT gmail.com (replace "AT" with "@")
