Technology and decision-making: A patient’s story

Jim and Terri Rogers are no strangers to medicine. Jim is a retired general and thoracic surgeon, and his wife, Terri, a retired operating room nurse. They have each spent more than 30 years working in hospitals and caring for patients. But that didn’t make dealing with Jim’s prostate cancer diagnosis much easier. Like most people confronted with the disease, they consulted multiple experts and went back and forth about the best treatment. Would robot-assisted laparoscopic prostatectomy or radiation therapy be most effective? [Editor’s note: The couple’s names have been changed to preserve their privacy. All medical details are as they reported them.]

To help make the decision, the couple flew from their home on the West Coast to Boston so that Jim could undergo an endorectal MRI, which wasn’t offered in his area. In some cases, advanced testing yields little concrete information, making it nothing more than technology for technology’s sake. But for Jim, endorectal MRI helped pinpoint the location and likely extent of his tumor, ultimately showing him which path to choose.

Here, Jim and Terri Rogers share their experiences, explain why they opted for one treatment over another, and offer an important reminder: prostate cancer can affect anyone.

What were the circumstances surrounding your prostate cancer diagnosis?

Jim: In November 2007, I had a general physical examination by my internist, and a PSA test revealed a PSA of 10 ng/ml. I had been having some urinary problems, so my doctor initially thought that the high PSA could be due to inflammation that accompanies prostatitis. So, I was placed on the antibiotic ciprofloxacin, or Cipro, 500 milligrams twice a day for three weeks. Then, a follow-up PSA came back at 11 ng/ml, so on the advice of a friend who is a urologist, I was placed on Cipro twice a day for six more weeks. In April 2008, I had a third PSA test, which was 13 ng/ml. At that point, I consulted another urologist, who performed the biopsies and made the diagnosis.

What did the pathology report show?

Jim: It was somewhat disquieting, revealing a Gleason scale 7, or a 4 + 3 cancer, with perineural invasion [see “Why PNI might be important,” below]. I recognized that as being a fairly aggressive tumor. The other disturbing fact was that the tumor was present in five out of six biopsy samples, or cores, taken from the left lobe of the prostate.

How did you react to the news?

Jim: I was absolutely stunned. I could not believe that I had prostate cancer. I’m well aware of the medical history of at least four generations of my family, and there hasn’t been a single instance of prostate cancer [see “It’s not all in the family, below]. I attributed the 12 to 15 months of urinary symptoms that I had, which suggested a slight obstruction, to benign prostatic hyperplasia (BPH).

How old were you when the PSA test was done in November 2007?

Jim: I was 70.

Had you ever had a PSA test before that?

Jim: Many times, but the interval between the one in November and the one before that had been about two or three years.

Do you remember what your PSA was two or three years ago?

Jim: I think it was in the range of 1.5 ng/ml to 2 ng/ml, which wouldn’t be considered abnormal for someone my age [see “PSA and age,” below].

So given the relatively low PSA and your family history, did you decide that yearly testing was not necessary?

Jim: Well, no. I had nothing against yearly testing. I was a bit overweight at the time, and I didn’t want my internist to harp on me about my weight. I wanted to bring my weight down first. Well, it took me two years to get myself into an acceptable weight range before I went back for another examination. In retrospect, that was a fairly foolish stance.

But the fact that you had no family history of prostate cancer made you think you weren’t likely to develop it?

Jim: Exactly.

Terri, what was your reaction to the diagnosis?

Terri: Well, when Jim came home after his physical in November and said his PSA was a little high, I wasn’t particularly nervous. His internist didn’t feel anything during the digital rectal exam, so he thought it was prostatitis. That was a little comforting. But when he had the second PSA done, I began to get nervous. We were in Costa Rica, and I said to Jim, “Maybe we should go back to the States and check into this.” But a friend of ours, the second urologist Jim saw, didn’t think things were really serious. He said to take the antibiotic for six weeks.

When we got home and Jim finished the second course of antibiotics only to have his PSA be even higher, I became very nervous. And when we finally got the diagnosis, I was devastated, at least at first. Then I was very angry with my husband. I had been harping on him for two years to see someone about his urinary problems. I’m a registered nurse, and I worked in an operating room for over 30 years. I knew that he had been having problems for almost two years. When I talked to him about it, he said, “It’s just BPH.”

What kind of urinary problems?

Jim: My wife knew that my urinary stream had become weaker and that it took longer to “accomplish the mission.”

Terri: Yes, I brought that to his attention two years ago, and that’s why I wanted him to go for a physical then. But he wanted to get his weight down first. If you know any surgeons, you know that they’re strong-willed people. I could not force him to go, so time went on.

What other tests did you have after the biopsy? What did the diagnostic work-up include?

Jim: The diagnostic work-up following the biopsy included a bone scan [see “Bone scan findings,” below], which temporarily sent up some red flags because there was dramatic activity in the eleventh rib on the left side. Subsequent CT scans and images of the ribs indicated that it was a traumatic fracture, not a problem associated with the cancer. I had a CT scan of the pelvis as well.

How did you get the information that you needed to decide what to do next?

Jim: The first thing I did was consult with the urologist who performed the biopsies. He recommended a prostatectomy. I asked him to set up an appointment with a radiation oncologist, and he did that. I met with that person, and we had a very thorough discussion. Initially, I had been leaning toward radiation therapy.

Of course, I’m a surgeon, and so my natural bias is to look for a surgical solution to a problem. But I recognized that the survival rate was basically the same for prostatectomy and radiation. And I had assisted on enough prostatectomies during my career to recognize that the standard prostatectomy was a rather crude, relatively blind procedure. That’s why I favored radiation.

But then I learned about the robot-assisted procedure [see Figure 1], the so-called da Vinci procedure, which seemed like a more refined and elegant procedure than the standard prostatectomy. Even though the surgeon’s fingers never enter the operating field, it’s my personal belief that visibility is infinitely better. So at that point, I became quite anxious to move forward as a candidate for robot-assisted surgery.

But you came to Boston for another opinion. What made you, a well-respected surgeon in an area of the country known for top-notch medical care, travel across the country to see a doctor you didn’t know?

Jim: When a friend of mine, who is also a doctor, found out about the diagnosis, the first words out of his mouth were, “Oh, Jim, you have to see a friend of mine in Boston.” I was receptive to the idea, recognizing that the more information I had up front, the better able I would be to make the correct treatment decision.

You’re right that excellent medical care is available where I live on the West Coast, and I had intended to seek out at least one more opinion, possibly two, here. But then I made the decision to go to Boston.

What additional studies did you undergo in Boston?

Jim: The trip to Boston was very informative. The doctor I saw voiced some skepticism about approaching my particular tumor with surgery. He also recommended an endorectal MRI [see “Endorectal MRI,” below]. It seemed to me that the one piece missing in our decision-making was that we didn’t really have a clear handle on the extent of the tumor. The pelvic CT scan didn’t show any evidence of lymph node involvement, but I thought the endorectal MRI would yield more information about the extent of the tumor. It wasn’t being performed in my home town at the time, so we made a second trip back to Boston.

What did your endorectal MRI show?

Jim: It didn’t show lymph node involvement. But it did show that the tumor was abutting the prostatic capsule. It also looked like there could be a focus, or spot, of cancer in the left seminal vesicle [see Figure 2]. I take that particular finding with a grain of salt because it’s always been my understanding that seminal vesicle involvement from prostate cancer is typically a direct extension of the tumor rather than a metastatic focus. But people with expertise in interpreting the MRI said there was a possibility that the seminal vesicle contained a separate tumor.

What were your thoughts at this point, Terri?

Terri: Well, I was so impressed with everyone in Boston. I had 100% confidence in what they said. But to cover all of the bases, we met with a surgeon out here after we got back from the first trip to Boston. He was an expert in the robot-assisted procedure Jim mentioned, and he had done several hundred of them. Jim seemed like he wanted to have the procedure done, but I cried all the way home. I didn’t want this person operating on my husband. But then we went back to Boston for the endorectal MRI, and that changed Jim’s mind.

Jim: Yes, based on the endorectal MRI and the skepticism about surgery, I was swayed toward external beam radiation. What clinched it for me, and the reason I changed my mind, was that if there were positive margins following the surgery, I would have to have radiation. The incidence of urinary incontinence with both surgery and radiation is higher than with either modality alone. Disease-free survival was my first goal. After that, the complication I would really like to avoid at nearly any cost is urinary incontinence.

As a physician and as a surgeon, when did you decide to turn to new technologies that had been reported as potentially advantageous?

Jim: I’ve always been on the forefront of adopting new technology. As an example, my group was the second surgical group in my county to perform laparoscopic gallbladder removal. I pioneered a breast biopsy technique out here, too. So I’ve been relatively quick to adopt new techniques and technologies when I have found them to be advantageous to the care of my patients.

Do you know why endorectal MRI isn’t performed where you live? Are there competing technologies? Or do doctors there not believe in the technology?

Jim: I asked that question, and they told me that they had actually gone away from using endorectal MRIs. My doctor implied that the machine they were using wasn’t powerful enough to give desired results, but he also didn’t seem to be impressed with the procedure. [Editor’s note: The availability of endorectal MRI for prostate cancer may have changed since the publication of this article in October 2008.]

Given your interest in new technology, why didn’t you choose the robot-assisted prostatectomy?

Jim: I recognized that I had a fairly aggressive tumor, and after the MRI, we had clinical evidence that it at least abutted the prostatic capsule. From my experience, I knew that there was probably microscopic disease outside the prostatic capsule. My thinking was that I’d have a better chance of controlling the margins with external beam radiation than with surgery.

You’re a retired surgeon, and you know how the medical system works. You also have a close friend who is a doctor and was able to direct you to a specialist in Boston. What advice can you offer men who don’t have these resources and don’t know where to turn for help?

Jim: To make a decision about what treatment to pursue, I think it makes sense to get information from a medical center that focuses on the specific disease because that’s obviously where the greatest expertise is going to be available. Now, if surgery is your chosen path, selecting a surgeon is a bit more difficult. Academic medical centers may be best when it comes to the overall approach to the problem, but the surgeon is an entirely separate matter. There are good surgeons and poor surgeons in academic medical centers, just as in community hospitals. But the layperson usually doesn’t have access to that particular information.

I’ve often wondered what I would do if I were in an unfamiliar setting, couldn’t get back to my “home turf,” and needed to find a crackerjack surgeon to perform an operation. My approach would be to contact an anesthesiologist and the operating room supervisor at the hospital and say, “If you were in my shoes, which surgeon would you choose?”

You are now home on the West Coast and under the care of a radiation oncologist. What’s happening with your treatment?

Jim: I am taking two hormone therapy medications — leuprolide (Lupron) and bicalutamide (Casodex). That’s resulted in a great many hot flashes each day, a common side effect. Aside from that, things are going well.

My radiation therapy treatments aren’t scheduled to start until early October, but my radiation oncologist placed the so-called Calypso markers in my prostate, instead of the traditional three gold fiducial seeds, at the end of August [see “Tracking the prostate,” below]. He described them as the Lamborghini of prostate markers because they provide video for targeting the prostate with radiation, not just photographs. That way, they can see the prostate in real time, make sure that the radiation is focused on the cancer and not surrounding tissue, and make adjustments if the prostate moves during treatment. It’s a real technological advance.

How are the markers inserted into the prostate? How big are they?

Jim: It’s an endorectal procedure, just about identical to prostate biopsy. The markers are about as thick as the graphite in a pencil and about 7 to 8 millimeters long. They stay in the prostate permanently, just like the gold seeds do.

Any parting comments or advice for our readers?

Terri: It doesn’t matter what your occupation or profession is or what your family history is. Prostate cancer can affect any man. Wives and partners really need to keep after the men in their lives if they don’t go to the doctor. Those regular visits are really important.

That’s good advice. Do you have anything to add, Jim?

Jim: Well, in the interest of keeping the remainder of the day harmonious, I’m going to say that perhaps husbands should listen to their wives.

Originally published Oct. 1, 2008; last reviewed April 21, 2011.