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.

Why PNI might be important

Perineural invasion (PNI) describes cancer that runs along or around nerve cells. Because the nerves are commonly located near the surface of the prostate, a finding of PNI suggests that the cancer is near the surface, too, and somewhat more likely to have spread, at least microscopically. Cancer cells may have also spread to other parts of the body because they can track along nerves to exit the prostate gland.

Even so, there is no consensus as to the significance of PNI. A small survey of 42 highly experienced urologists in 2004 found that most did not consider a report of PNI to be important for planning treatment; less than half thought it should even be included on a pathology report. But almost a quarter of respondents said they thought PNI was clinically important and that it would guide their treatment recommendations.

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).

It’s not all in the family

A man who has a father, brother, or son with prostate cancer has two to three times the risk of developing the disease as a man whose first-degree male relatives don’t have the disease. A man who has two or more first-degree relatives with prostate cancer faces a risk of five to 10 times greater than one who has no family history of disease.

Most men who are diagnosed with prostate cancer, however, do not have an inherited form of the disease. A study of cancers in twins found that environmental factors play a larger role in prostate cancer risk than heredity.

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].

PSA and age

Several years ago, a PSA of 4 ng/ml or less was considered normal. But studies have shown that PSA rises naturally with age, prompting physicians to set guidelines for what constitutes “normal” at various ages. Keep in mind that a PSA within the normal range for your age does not rule out cancer, especially if it is rising rapidly.

Age in years “Normal” serum PSA (ng/ml)
40–49 0.0–2.5
50–59 0.0–3.5
60–69 0.0–4.5
70–79 0.0–6.5

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.

Bone scan findings

When prostate cancer metastasizes, it is commonly found in bones. For this reason, when the PSA is quite elevated or other tests suggest a large or aggressive tumor, doctors recommend a bone scan. During this test, a health care provider injects a small amount of a radioactive substance into the patient. Areas of bone growth and repair take up the substance. In an active cancer, cells divide and multiply at a much higher rate than in normal tissue. An area of rapid cell growth will appear as a “hot spot” on the scan, which uses a special camera to detect radiation coming from the bone.

If you are told that your bone scan is abnormal, keep in mind that not all abnormalities are due to metastatic cancer; in fact, most have another cause. A bone scan is deemed “positive” if it reveals cancer.

Your doctor may recommend having an x-ray if he or she spots a suspicious area on the bone scan. (This is based on the fact that a bone scan is more likely to show abnormal areas secondary to cancer before x-rays will.) If the bone scan is abnormal and the x-ray shows no evidence of abnormalities, the bone scan may have detected a colony of cancer cells. But if an abnormality shows up on the x-ray that matches the bone scan “hot spot,” the radiologist may conclude that you have arthritis, a fracture, or another benign condition readily detected by both x-rays and bone scans.

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.

Figure 1: Operating by remote control

Operating by remote control

To perform a robotic-assisted laparoscopic prostatectomy, the surgeon sits at a console and manipulates robotic arms, which are fitted with tiny cameras and surgical instruments, to locate and remove the prostate. The console contains two full-color computer screens with a magnified, three-dimensional view of the prostate and surrounding tissues. The surgeon guides the robotic arms by manipulating manual controls while watching the screens.

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.

Endorectal MRI

MRI uses the electromagnetic properties of hydrogen molecules to collect information about organs and other tissues and converts it into images. Because cancerous tissue has a different set of magnetic properties than normal tissue, it can stand out in pictures.

Radiologists often use an endorectal coil during MRI of the prostate. This is a thin wire that’s covered with an inflated balloon and inserted into the rectum. The coil receives the magnetic waves, which are analyzed with a computer. The closer the coil is to the target tissue, the stronger the signal — and the better the pictures.

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.

Figure 2: Telling pictures

Telling pictures

An endorectal MRI helped pinpoint the location and extent of Jim Rogers’ prostate cancer. Image A shows the prostate and a tumor in the gland’s left peripheral lobe. Image B shows cancer in the left seminal vesicle.

Images courtesy of Ivan Pedrosa, M.D., Ph.D., and Neil M. Rofsky, M.D.

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.

Tracking the prostate

Because the prostate sits in front of the rectum and just below the bladder, its position can shift as the rectum and bladder fill and empty. To direct beams of radiation at the tumor and help protect surrounding tissues, radiation oncologists have traditionally made marks on the body and implanted gold seeds to serve as radiographic landmarks. Before each radiation therapy session, they check the position of the gold seeds with x-ray (or use ultrasound or CT) and adjust the radiation beams if necessary.

Seeking to monitor the target in real time throughout the radiation therapy session, a Seattle company developed the Calypso System, which uses tiny transponders about the size of a grain of rice, to monitor prostate motion. If the tumor moves outside the path of the radiation, the system alerts clinicians, much like a GPS system in a car can alert you when you make a wrong turn. The transponders use electromagnetic fields and don’t contribute any additional radiation to the treatment. The Calypso System received FDA approval in 2006.

A few studies, which were funded by the manufacturer, have confirmed that the prostate can shift by several millimeters during treatment and that the Calypso System can detect the movement and prompt changes to the treatment. One of the most recent papers, published in July 2008 in the journal Urologic Oncology, concluded that the system “should decrease adverse events and improve patient outcomes.”

But don’t count on your local medical center having the Calypso System. No large, independent studies have proven the device superior to gold seeds, or fiducials, in terms of survival or time to biochemical recurrence. Until they have evidence to the contrary, many radiation oncologists plan to stick with the less expensive gold standard — gold fiducials.

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

Comments
2
James

I was diagnosed with prostate cancer in july 2014 and really just beginning this journey myself. Gleason score 6 (3+3)I am scheduled for a PET scan this next week. I am young at just 46 with relatively low PSA levels at 4.35 but they cont to rise. I have had a number of symptoms including reduced flow, urgency, and some pain. Thanks for your comments on your journey

Irv Kalick

I recently had a few high PSA scores of 9, 11, 10…although historically over the last 20 years my scores have been around 5-7….I never had scores below 3…I had 2 biopsies in the early and mid 90s….

I got an endorectal MRI two weeks ago which came back normal…..so I’m now trying to figure out what’s next? Do I need a biopsy? Change my diet? wait 6 months for more PSA tests?

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