Patients speak about prostate cancer and laparoscopic radical prostatectomy
Charlie Royce, Ada, Michigan
I am a 39-year old CEO, husband, and father. I had no time for illness, and this is my story. If you have been diagnosed with prostate cancer, my story is just like yours. Even though some of the diagnostic stuff will vary and I am probably younger than you, many of the concerns I had (surgery, recurrence, incontinence, impotence) are probably familiar to you by now.
The good news is, you are living at a time that all these things can be dealt with. And, now that you're reading this, your options for prostate cancer surgery have just improved. These letters and contacts became my lifeline once I decided on laparoscopic radical prostatectomy (LRP). After speaking with Dr Krongrad's patients you will be more confident than ever that you have made the right choice. I am just going to do my part, guessing that you are looking for information on prostate cancer.
I was diagnosed officially on March 9, 2002, a date permanently imprinted in my mind. I remember deciding to grab the phone on a Saturday morning, even though I was on my way out the door. While it was a dark moment and set in motion a series of amazing events, I am now eternally grateful to have had a GP doctor who just decided it was best to be thorough, a local urologist that always does biopsies whenever he does an ultrasound, and an extraordinary surgeon and procedure that are taking most of the pain out of prostate cancer.
Chances are your diagnosis started with a routine physical (in my case it was the first in 8 years). My DRE was unremarkable and my prostate PSA test was a 2.3, not considered extraordinary and because I had no previous history of any PSA it was not much of an indicator. I remember, chatting with my GP about whether it was even worth going in for the ultrasound.
He said "if you were 40 it would be time to go anyway, and you will probably not be back for another few years, so just go do it".
Well, by now you have probably been through the ultrasound and prostate biopsy, so the worst is over! In my case the urologist was an extra thorough man that I swore I would never speak to again after he finished with me. The discomfort of the ultrasound and the recovery time from the test really made me think our healthcare science has got to improve. Then I got the phone call, confirming cancer, and everything changed. After a CT scan and a bone marrow test and my first week on the internet trying to spell "prostatic adenocarcinoma," I was back in his office getting the full explanation of prostate cancer and learning my options. I had by this time devoured, Patrick Walsh's The Prostate: A Guide for Men the Women Who Love Them. It was an excellent source for the basics of the disease.
My urologist went over the more recent options including radiation seeds and cryotherapy along with the issues that go with them, explaining that there are long term issues of recurrence that would hang over me indefinitely. He explained the importance of prostate removal to get the whole problem taken care of and, while he did not know a great deal about it, he did mention LRP. He could not endorse any procedure other than the full open prostate cancer surgery (radical retropubic prostatectomy), and he was adamant about me making sure I found the most qualified hands to do the procedure. His were available of course, but I was already thinking "I need to find the best." I emailed Dr Walsh at John Hopkins, sort of the RRP King. I also contacted Dr. Meyers at the Mayo Clinic among others. They all agreed that despite its very small size, my tumor would grow and give me trouble if I did not deal with it. The sooner, the better.
My insurance company was not too pleased with my choices for a surgeon and told me I could have it done locally or I could pay for it myself. I did not like my options and spent days scouring the net for anything else available. There is a point where your mind can no longer fathom the clicking of the mouse and the waiting for the page to load to yet another description of the traditional procedure and the 4 weeks out of work that go with it. But the next moment, drilled in my brain forever came after a prayer call from my church. Imagine yourself sitting at your desk, not doing your work but searching the net yet again for answers. The phone rings and the woman explains that I am on her prayer list and would I like to pray on the phone with her (a first for me). She speaks to my issues and asks for guidance and direction for me and my family. I hang up when she has finished, click my mouse, and up pops "Krongrad-Urology.com.[today www.laprp.com ] ..."
Just like all His other miracles I was now reading about a procedure that had me up and around the day after the procedure, no blood loss, just read the details! Of course being of skeptical mind and not believing everything I read on the net, (like the acupuncture approach) I needed verification. I checked back with my local urologist who reminded me of what he knew of LRP and that he did have one other patient that had had one. I checked nationally and found more than a dozen research facilities doing them. I even found a clinic near my home town that was doing the procedure.
Unfortunately these doctors all behave well........ LIKE DOCTORS! Never returning calls, always insisting you make an appointment before they hear what you have to say. Totally unable to treat you like a cancer patient and answer your questions. Then came my third amazing experience.....my first call to Dr Krongrad was to his message machine. It was the Thursday before Easter and I was traveling. While used to leaving messages, I thought "this is another typical experience," I checked my cell phone mail that evening to find a long message from the man himself, not only inquiring about my situation, but providing me with his cell phone number and the number at his father's house in New Jersey where he was heading for the weekend. I saved the message and played it for people for a week! We spoke several times the next week, each time he answered any question I asked completely.
Dr Krongrad "adopts" you as a patient and works overtime to make sure you are comfortable.
The following is my detailed post surgery diary. While I experienced very little pain especially compared to the RRP procedure stories I have heard, I thought to explain in detail would provide somewhat of a roadmap of what to expect in LRP. If I do mention discomfort or pain, be assured it was minor and tolerable. I took only 2 Tylenol and frankly did not even need them.
My surgery was done May 20th. We flew to Miami on Sunday the 19th. Perhaps a little known "issue" the day before surgery, your entire digestive system must be cleaned out. Fleets soda causes your system to flush "literally" and right now. Hind sight speaks to perhaps not flying while your system is emptying. This and contemplating the surgery takes its toll on your sleep the night before surgery.
We arrived at the hospital at 6:30am. By 7:00 I was changed and in bed, getting an IV, talking to nurses, the anesthesiologist, surgeon's assistant etc. -- all very qualified people. My wife was with me until I went to sleep. While I agonized about this time, it really went quite quickly. I was given the happy juice at 8:30 and went out like a light. I did oversleep a bit. I woke around 3:00 and moved to a patient room. By 5:30 the anesthesia had dissipated enough to walk around the hospital. This was the first time I noticed any discomfort at all. While standing I noticed my swollen abdomen and a major change in the strength of my abdominal muscles. Of course this is all logical because of the process, but none the less critical to know. Getting up and down are the only real obstacles to maneuverability. While the anesthesia can do weird things (in my case, the heels on my feet hurt) it is all temporary and workable. I did have a lot of gas moving around my system as well. This was my only source of discomfort post surgery.
Consider the fact that your body has not had any intake of food for 48 hours, and no water for 15. Your digestive system just took a nap for the first time ever, and your body has just started to heal from the surgery. The fact that all this can happen and you are still feeling half way decent is extraordinary. The chicken soup and Jell-O taste like food from the gods. I had 2nds and 3rds. I also drank a lot of water that first evening. Because a nurse is checking you every couple of hours your night in the hospital is restless at best. We watched a lot of TV and portable DVDs and slept or napped mostly that first night.
When you first wake from surgery, you have a catheter bag draining your bladder, and a Jackson-Ppratt bottle draining extra fluid out of your abdomen. The JP is supposed to be your friend (ie it gets rid of fluid leaking from your system) but it is definitely a new experience. The tube (imagine this) just protrudes out of you just below and to the right of your bellybutton, right where every pair of pants you own rests on your hips. In order to be comfortable you must wear your pants low. I found button fly or tie string pants to be the only thing that worked, unless you have pants 2 sizes too big. In addition, two other surgical incisions that are healing are at your waist as well. Loose comfortable clothing is really important.
I checked out of the hospital Tuesday about 9:00 am. Dr Krongrad had recommended the Beach House Hotel on Miami Beach. While a little pricey it really was a terrific place to recover. We checked in at 10:00 and immediately slept until 4:00 uninterrupted. Dr. Krongrad informed us that the most common problem patients have the day after surgery is sleep deprivation, and my case was no exception. After that hefty nap, we walked the beach. I then had a bowl of soup at the poolside restaurant, and laid around for the rest of the day. Not bad for the day after cancer surgery.
Tuesday night was exciting. The first sign that your intestines and digestive tract are functioning is the passing of gas. Some friends of ours had called and asked if they could pray for my recovery, I asked them to pray for a passing of gas. About 2:00 am it started, we had a little celebration and called our friends to thank them. By 4:00 am I had my first BM, which is apparently a bit ahead of average. Fine with me, because it meant I could start eating real food!
Wednesday morning breakfast is another moment permanently etched in my mind. It was great to eat scrambled eggs, bagels, toast, and coffee. As you can imagine, the low food intake takes a physical toll on your body. (I lost 3 pounds between Saturday and Wednesday) But to eat real food again is a pretty exciting event.
I received my pathology report that showed negative margins and no spread of the cancer around 10:00 am. What a relief! All the research and agonizing revolve around the hope that whatever you do will return this result. We celebrated and gave thanks.
We spent the rest of the day laying around or walking the beach. The human body is extraordinary in its ability to heal. Every morning post surgery even now 3 weeks out shows improvement. Each morning for the first 10 days it was amazing to sense the changes.
Thursday was much like Wednesday, only we walked close to 2 miles. I did have a rather exciting discovery while reading a very descriptive passage of one of those treasure-hunter and beautiful-women novels. While I thought the book was quite tame, one passage went into great detail and to my surprise, I recognized and felt an erection...catheter and all. I guess this was another record of sorts for Dr Krongrad's patients. I did choose to skip ahead in the book, rather than pursue anything, but it was great to know that things were returning to normal.
Flying home was no big deal. Running to catch a flight is out of the question. But the time on the plane, getting through security etc. was pretty much like normal. Just make sure you have comfortable pants!
I had an important business meeting eight days after surgery. It was great to be able to wear a suit and work the room. The catheter was taken out the next day. From this point on, the day revolves around dealing with your continence.
Initially after the catheter was first removed the shock to my system took most of my control away. But soon things improved. Life without the catheter is good. My local urologist put a huge diaper on me that I tossed out as soon as I got home. Since then I have just used absorbent pads to deal with the occasional leak. For the first few days, I leaked every time I stood up. The muscles must contract when you stand and that is when a certain amount of fluid is released. Nighttime is difficult as well. I made several trips to the bathroom in a hurry throughout the first few nights. Now 3 weeks out nighttime is much better, the leaking has largely stopped and I am wearing the pad "just in case". Definitely know that caffeine and carbonated beverages irritate your bladder and effect continence. I tested both and recognized the effect they had. Stick to decaf coffee, tea, juice, and water.
Also, once the catheter was removed the whole issue of having erections became easier to fathom....and I have. At three weeks post surgery, the muscles are responding, just not to the full previous extent, but the sensations are all returning to normal with amazing ease. It is worth mentioning that with all the continence and other physical recovery issues, erections do not seem to be a high priority yet. After my first ejaculation (10 days post surgery) I felt it set back my continence progress. There is a lot of healing going on down below. It's best to just let the healing happen for a while.
The LRP experience is rewarding in so many ways. To know that your cancer is dealt with, (just like RRP) yet to be up and around and living pretty much a normal life right away is truly extraordinary. In fact, I think the advice I have most received from Dr Krongrad is to "not do too much" and "remember you just had major surgery!"
It is easy to do too much because you feel like you can. The relief from having the cancer removed, and knowing the surgery is over gives you a great sense of comfort. Now the only issue is to make sure you take it easy, even though you feel like you can do anything. I coached 2 soccer teams, played my saxophone in my church band, did light yard work, and ran my company 40 hours only one week after surgery (and drove my wife nuts!). I'm sure this was more than I should have done. The point is I felt good enough to do it all.
Many many thanks to Dr Krongrad-and the God who made him!