After the shock of discovering that I had cancer, the next step was to set up a treatment plan. As I mentioned before, there are two main options for treating prostate cancer: surgery and radiation. My urologist recommended surgery, but he also recommended that I talk to a radiation oncologist to get the full picture. In addition to setting up that consultation, he also scheduled a PET scan and an MRI to get more information on the location and size of the tumor.
Even though the doctors weren’t worried, I made a decision early on to move as quickly as I could and not waste time. Unfortunately, there were limitations on how fast things could go. The next opening for the PET scan was about three weeks away and the MRI wasn’t available until a couple of weeks after that. It was very frustrating to be told that I had cancer and then to be told to wait for weeks to see exactly how bad it was.
There was an upside to waiting though. I was able to get scheduled for a second opinion with a very experienced doctor at a nationally-respected hospital. This visit included consultations with both the surgeon and the radiation oncologist.
I mentioned in the first installment that my local urologist had set up a prostate cancer resource page. One of the things I learned from that page was that a surgeon’s experience level is directly related to the probability of a successful surgery. While I liked this doctor a lot, I was concerned when I learned that he had only performed two of the radical prostatectomies on his own. In the course of his training at George Washington University, he had been involved in 50 or so more in various capacities, but the fact that he was a novice worried me a lot.
My next step was to consult with the radiation oncologist at a nearby cancer center. I liked this doctor as well and he made a convincing argument for radiation treatments. At that point, however, I still hadn’t done the PET scan or MRI and wanted to see what those tests revealed before I committed to a course of action.
The PET scan came next. I had never had one of these done and was only vaguely familiar with them. If you aren’t familiar with them either, a Positron Emission Tomography scan uses a radioactive substance injected into the body to show the status of organs and tissues.
From a patient’s perspective, PET scans aren’t bad. Unlike a colonoscopy, there is no annoying prep. Even the fasting prior to the procedure isn’t nearly as extensive as for normal bloodwork (although follow your own doctor’s instructions). I could even drive home since there was no anesthesia.
The first step in the procedure is to inject the patient with a radioactive tracer. This doesn’t hurt any more than a normal injection and IV. I was a little disappointed that I didn’t develop superpowers after the injection, but at least I didn’t keep my wife awake that night by glowing in the dark either.
Then the waiting game begins. It takes about an hour for the tracer to circulate through the body, so I was told to sit and relax. As is my usual habit, I brought a book, but relaxing was not in the cards. As I sat in the recliner and read, my Fitbit showed that my heart rate was in the exercise zone. As far as Fitbit knew, I was out for a run.
After a brief wait in which I met my weekly cardio goal while still sitting in the chair, the nurse took me into the scanning room. Basically, the PET scan machine is a big ring. You lie on a conveyor belt and it moves you through the ring while it scans you.
The nurse offered a blanket and my advice is to take it. I wasn’t cold at first, but the scan takes about 20 minutes and you aren’t supposed to move during that time. If you don’t take the blanket at the beginning, you can’t get one in the middle of the scan. By the end of my scan, I was glad I took the blanket.
The MRI, Magnetic Resonance Imaging, was more problematic. I’ve had a couple of previous surgeries including one for scoliosis back in 1989 when I was a teenager. That surgery involved a metal implant on my spine to correct the curvature in my spine. As it turns out, you can’t get medical records from 1989 in 2023 so the MRI eventually got canceled because of the danger of using strong magnets around metal implants for which the doctors didn’t have the technical details. Who knew that back surgery in the 1980s would prevent me from getting an MRI 34 years later?
While I haven’t had an MRI, my mom, who is a survivor of colon and breast cancer has. She tells me that from a patient’s perspective, it’s a lot like the PET scan.
By the time I got to my second opinion appointment, I was vacillating between surgery and radiation. Both had pros and cons and it was a difficult choice to make. Two things finally settled it for me. One was that the radiation oncologist at Emory, the hospital where I had the second opinion, leaned toward surgery. A clincher was when I asked him about the possibility of recurrence after radiation and he answered, “You’ll still have a prostate.”
The second factor was more personal. I’m a professional pilot and I had to consider the FAA’s opinion as well as those of the doctors. To keep my job, I have to maintain an FAA medical certificate and the Aviation Medical Examiner who issues that certificate has to follow FAA guidelines.
As part of my research, I contacted the aviation medicine experts at the Aircraft Owners and Pilots Association. I found that the FAA is okay with both surgery and radiation therapy, but that treatment has to be complete before a pilot can return to flying. The rub is that radiation is often followed by hormone therapy and the FAA guidelines do not permit pilots to fly while taking Lupron, the most commonly used drug in hormone therapy. The full course of hormone therapy can be a year or longer.
Considering both my medical condition and the economic realities of the situation, the choice seemed obvious. I asked the Emory surgeon when he could fit me in. I expected a wait of weeks or months, but he answered that he could get me on his schedule for the week after next. If that didn’t work, he was going on vacation and it would be another two weeks.
I consider this rapid scheduling to be a minor miracle. As it turned out, my follow-up appointment with the original hometown urologist was scheduled for almost the same time as the surgery with the more experienced doctor. If I had stuck with the original, inexperienced urologist, I would have had to wait at least several more weeks for the surgery, but I was getting quickly scheduled with one of the most experienced prostate surgeons around. It definitely felt like a win-win.
In the weeks that I had to wait for my surgery, I practiced kegeling. Kegels are pelvic floor exercises that strengthen the muscles that you will need after the prostate is removed.
The combination of removing the prostate and nerve damage from the surgery has the combined effect of causing incontinence in most prostatectomy patients. There is a detailed discussion of the biology involved in the Prostate Health Podcast, but suffice it to say that you have to retrain the muscles around your bladder to control urination. This is done by performing kegel exercises.
Kegels can be done by both men and women, but the instructions that I’m linking here are for men. Essentially, tense the same muscles that you would use to stop urinating in mid-stream and hold those muscles for a count of ten, then relax. If you hold your breath or tense your stomach, you’re doing it wrong. I’ll add that doctors don’t recommend that you practice kegeling while urinating because it can lead to incomplete emptying of the bladder.
In the weeks when I was deciding on what treatment to choose and then waiting for my surgery, I was a kegeling machine. I kegeled constantly. I kegeled when I sat watching tv. I kegeled when I was lying in bed. I kegeled while I walked the dogs (which isn’t easy). I kegeled while driving my car and flying my plane. And I do think that all this kegeling helped me after the surgery. (I’ll discuss more tips on preparing for surgery and talk more about post-op in later installments.)
At this point, I also started to get nervous about COVID again. I wasn’t concerned about the disease itself as much as I was worried that positive pre-op COVID test would delay my surgery by several weeks. I wanted to get it over with. I also didn’t want to deal with COVID as I recovered. To protect myself, I started occasionally wearing a mask again and limiting my exposure to other people at least some of the time. In the end, the test that I took three days before surgery showed that I was negative.
Finally, the day of the surgery arrived. Once again I was fasting and showering with a special pre-operative soap. We drove to Atlanta and checked into the hospital.
If you’ve ever had surgery, the pre-op procedures weren’t any different here. There’s legal paperwork, getting an IV started, and verifying the procedure so I didn’t accidentally end up getting a hysterectomy or something. I’ll give a shout-out to Emory because everyone involved was very nice and professional. I didn’t have my Fitbit on, but I’m sure it thought I was getting another workout.
The actual surgery is performed robotically through laparoscopic incisions. A robotic prostatectomy typically involves a stay of one or two nights in the hospital but may also be done as an outpatient procedure.
I remember being wheeled down the hall and into the operating room. I remember joking with the team in the OR, thanking them for saving my life with the surgery, and admonishing them to make sure they got all the cancer. Then the next thing I knew, I was in a groggy, anesthesia-induced haze in my own hospital room.
One interesting thing that the team told us later was that I had started singing unintelligibly in the middle of the operation. I never woke up, but apparently, I started to come out of the anesthesia. They upped the dose a bit and put an end to my impromptu concert.
When I woke up, I was without a prostate for the first time in my 51 years. I’ll tell you what happened after that in the next installment.
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