Patients speak about prostate cancer and laparoscopic radical prostatectomy
Fergus Dickinson, Little Rock, Arkansas
[This story is told by Fergus' wife. It has it all: dramatic prostate biopsy side effects, stress and prostate cancer, the daVinci robot, and even helpful hints]
Being a task completion focused CEO, my husband decided to have that long-delayed prostate biopsy two days before the end of a presidency of an international university. His employment contract had allowed for extended COBRA coverage and since he was about to launch a private consultancy in international education, he just wanted this nagging test behind him.
It never once occurred to him that this action could be the beginning of a medical journey which would ultimately consume both of our lives for months to come. Before the prostate biopsy, his life expectancy was/is 100+ given his family history and the fact that his only medical experiences in 63 years were a vasectomy and a colonoscopy.
Tip number one.... if you have male offspring or siblings and you are alerting them to a potentially inherited propensity for prostate cancer, remember that a diagnosis of cancer has health insurance consequences, which are lifelong. Make sure that they have sufficient long-term health insurance in place before sending them for a prostate biopsy. You do not want to be "pre-existing" when shopping for new health insurance no matter how secure your financial status is.
We waited 24 hours to watch for prostate biopsy side effects and then hit the road for a ten-hour drive to a boat to an island where we own property. Three hours into the drive my husband became unusually sleepy and so we swapped drivers.
Within 30 minutes he was vomiting on the side of the road. My first reaction was that he was having an intestinal reaction to the antibiotic they had given him for the biopsy, but I knew that I needed to have an answer to the temperature question before calling the physician to get a new prescription, so I headed for a pharmacy. We were in the middle of absolutely no-where and that hunt took an additional hour.
Tip number two.... Purchase and carry a digital thermometer with you in your purse and purchase an inexpensive blood pressure kit from a place like Target, because temp and BP/pulse will be necessary information throughout this entire experience. His temp was 102.8. So much for my theory about intestinal intolerance. This was sepsis, one of some rather rare prostate biopsy side effects.
I started driving back to the interstate while calling the doctor because I knew we were in bigger trouble than a reaction to the antibiotic and I was convinced that I needed a hospital. The only trauma center on the entire 10-hour route was 10 miles from where we were and that is what saved his life.
The next few hours were intense. Fergus was spiraling into septic shock and it took aggressive calling for attention to his rapid decline to get sufficient focus out of the ER docs, but once one of them recognized sepsis, we had five doctors and two nurses riveted to his bedside. I was instructed to "call any family within driving distance."
Murphy's Law was now activated and we were beginning a seven week battle with an E coli bacterial infection contracted as a side effect of the prostate biopsy that resulted in four trips to the ER, multiple days in ICU, and weeks in the hospital. The drug they gave him is commonly called "leave 'em dead." The possibility of prostate cancer became a secondary crisis.
We spent over a week in a hospital in a strange city before we even received the prostate biopsy results. Of 12 prostate biopsy punch sites, 11 were clean and one was positive with a Gleason score 6 and it was judged to be cancer stage T1c.
Interestingly, this diagnosis of prostate cancer was less impacting given the near-death septic shock incident, but we still needed to research, self-educate and decide upon a course of action. The bacterial infection competed with the cancer for center stage every single step of the journey, robbing us of opportunity for precious pre-surgery intimacy.
Tip number three.... do not let prostate biopsy side effects stress and prostate cancer and/or your research phase rob you of intimate bonding time pre-surgery. While Fergus's medical and physical profile presented him as a "text-book" case and a coveted candidate for laparoscopic radical prostatectomy, LRP, the bacterial infection became a new issue and placed added risk to the prostatectomy.
Following a third flare-up of the bacteria, I ended up having to drive him from West Virginia to Miami with what is called a PIC line in his arm, which is an IV with an open line up into his shoulder, past his lungs and toward his heart. I had to learn to infuse him with antibiotics, flush the line, administer heparin, and keep it sterile while keeping him from picking up anything heavier than a piece of paper. The antibiotic was selected by guesswork, as there were no successful lab cultures available from his most recent hospitalization.
Flights were out of the question as he was susceptible to going into septic shock at any time and they would not be able to handle him on an airplane. He kept that needle in his arm right up to the moment of his prostate cancer surgery. I grieved for what had been, the morning of his surgery, making me a complete mess in the waiting room. How embarrassing!
Tip number four...Accept help with the decision-making process. During all of this trauma and distraction from the prostate cancer issue, I did the exhaustive research on what our options were. Fergus was simply too sick much of that time. While most people's first reaction is to get that prostate cancer out and be done with it, I strongly suggest that you research each option presented. Just "Google" prostate cancer treatments and you will have more than enough to read. This process will make your final decision more comfortable as opposed to reacting quickly with the typical "get it out" emotion and then second guessing the night before surgery. It would not be fun to sit in front of a TV watching a commercial for prostate cyrotherapy while doing bowel prep for laparoscopic radical prostatectomy, LRP, and wondering if you have made the right choice. You also do not want to be that overly informed patient who freezes with so many facts that making the decision becomes impossible. At some point, you must trust and let go. This is a difficult thing for many CEO types to do, which is why I suggest having a partner, mate or friend assist in the research/decision process.
Tip number five.... give great thought to where you want to stay those first intense days following surgery. Some people may prefer the total privacy of a condo rental. You cannot time the recovery phase as it relates to sleep and accidents and having hotel cleaning staff in your face every day may be very invasive. This worked well for us and the view was healing. Others may prefer a hotel with restaurant service because running out for take-out food is a distraction to the helpmate. Some options will not want to rent to a patient in recovery due to the perceived risk to their unit. I lied, I stayed on top of the issues and we had no cleaning bill. It was a lot of work! Note that the restaurant options on Biscayne Blvd toward South Miami are superb, from PF Chang's to a wonderful bistro and don't tell your children about the Aventura Mall, they will want to come help!
Now I am going to give unabashed testimony for using Dr. Arnon Krongrad for two reasons:
First, he is undeniably and certifiably the most skilled laparoscopic radical prostatectomy surgeon in this country, having performed and taught this procedure since 1999. Ask his staff how many of these procedures he has done. The number rises weekly. My husband's urologist, well trained on the DaVinci robot, looked at his actual surgical images, shook his head and said, "I just don't know how he does the sewing. I just don't get how these guys can do this without the machine!" He was most impressed with the account of the size of my husband's prostate compared to the miniscule size of the incisions.
Second, never have I known a physician to attend to a patient and his helpmate with the degree of focus we received during our entire ordeal. The true test was the 5 AM post-operative phone call during which he saved us from an ER admission by talking us back out of the ER, because he thought we could handle the slight post-surgical fever without putting Fergus through the stress of yet another hospitalization.
He then showed up at our rented condo door to "eyeball" Fergus rather than use up precious healing energy getting Fergus to his office (he even hand delivered a package we had forwarded to his office so that we could tend to a financial matter with a time deadline). While he was in another surgery, his staff called every hour to check on Fergus's status.
It took courage on Dr. Krongrad's part and a great deal of experience for him to confidently risk sending my husband home with a fever. Thank goodness he did! He saved my husband from one more setback.
Tip number five: If you are diagnosed before this remarkable, inquisitive, compassionate and brilliant surgeon gets bored and changes vocations, I strongly urge that you take the time to email him with questions while making your decision as to your options. Unlike most of the facilities, which will not speak with you until you have demonstrated that you fit within their qualifications for their procedure, Dr. Krongrad will answer with great intelligence any question you can throw at him. He is not interested in simply selecting optimal patients in order to keep his statistics for success rate high. He is interested in helping you save or extend the length of your own life. He is not fighting for business, he is fighting for you!
Most of the patient posts deal with the first few days following surgery. I can tell you that the following post surgery supply list will make those days easier. Bring spare bed protection and extra towels for chairs, so that you are not inconsiderate of hotel/condo furniture. It will also improve your chances for uninterrupted sleep! Those blue pad protectors called "chucks" are great because you can also cut them in strips and wrap them around the catheter site on the heavy leak day (READ THE DISCHARGE SHEET WHICH PREPARES YOU FOR THAT ONE!). We were walking the Hollywood Boardwalk the day the leaking happened and we abandoned all plans and headed back to the condo. Had we not had lots of paper towels and those "chucks", we would have had carpet-cleaning charges to say the least!
Bring slippers or keep the ones from the hospital. They also save you from having a carpet cleaning charge! Bring a roll of paper towels and large wastebasket bags to gather up all of your used supplies. If you are not flying, consider bringing a paint bucket to hang the bed bag on overnight. I am dead serious! If you leave the tube open it will flow into the bucket and you can get much needed sleep rather than having to be up every four hours to empty the bag. If you are flying, take the plastic washbasin from your hospital room. You paid for it and you can keep the sleep bag in that when not using the leg bag. It makes a huge difference, trust me! You can then literally kick the bucket across the room rather than bending over to get that bag off the floor.
Bending is not fun the first week! Medical tape is our friend; you will be amazed when you will need it. Scissors or a penknife will come in handy. Loose fitting drawstring pants, long or short, are a must! A warm-up suit to leave from the hospital and those trendy below the knee cargo shorts will be a life-saver for travel that first week or two while a catheter is in place. Absorbent cotton boxers will work over the catheter post-surgery.
A friend or family member to make the constant food run is a must if you are not staying in a hotel with a restaurant. You will need Colace and Aleve before you get home, why not have it with you to avoid one more errand! A doughnut (pillow with center hole) will make the ride home and subsequent days of sitting anywhere much easier. My husband thought it was unnecessary until two weeks after surgery and now he goes looking for his doughnut each morning.
This reminds me, a well-developed sense of humor and strong sense of self (no room for ego here!) will make the entire ordeal pass with less frustration and more laughter. The entire experience can be a real turn-off without patience and laughter and each of you will retreat into your own cocoon from time to time, but this too shall pass! There is nothing more endearing than a temporarily compromised man making fun of his own predicament with grace and charm. While the above accounting make the ordeal seem to be all absorbing of one's energy, my husband signed four consulting contracts, hired an operations manager, set up two offices and secured three university partnerships while all this was going on.
I gave Dr. Krongrad permission to give out my cell phone number in case anyone wants to ask further questions. The more you know going into this, the easier it is to get to the other side. And try to stay away from hurricane season. Enough is enough!