Pete Souza: Surviving Prostate Cancer

Nov 22, 2005

NPPA member Pete Souza was President Ronald Reagan’s photographer during the Gipper’s second term. He’s photographed stories for National Geographic and LIFE magazine, and in the early 1980s he was a staff photojournalist for the Chicago Sun-Times. Today he’s the Chicago Tribune’s national photographer based in Washington, DC, and this year he’s been battling prostate cancer. Souza told News Photographer magazine today what he’s learned from the experience, information that we need to know for our own health.

By Pete Souza

WASHINGTON, DC - When the doctor told me earlier this year that I had cancer, all I could think to ask him was, “What should we do?”

At the time, I felt little emotion. My dad died of prostate cancer in 1999, and now I had it. I knew it was supposedly a slow-growing disease but also knew first-hand that not everyone survived it. Yet I soon discovered I didn’t know as much about prostate cancer as I thought I did.

Internalizing emotion for weeks, I researched the disease in depth, read about potential treatments, met with many doctors, informed family and friends about my cancer, and then finally made my decision on which treatment to use.

The emotion of having (or hopefully, having had) cancer is beginning to catch up with me as I reflect back on the past several months. I’ve learned so much, met so many great people, and received such great support from family, friends, and fellow patients.

Conversely, I look back and remember that I was also thoroughly confused at times trying to decide which treatment was best for me. Different doctors proposed completely contradictory advice. (“You should definitely have surgery, not radiation,” said one. “You should absolutely have radiation, not surgery,” said another.) I had the distinct impression that some doctors advised what was best for them, not for me.

In the end, I decided the best treatment for me was to have brachytherapy (radioactive seed implant) preceded by five weeks of external radiation. I chose this dual treatment for many reasons but mainly because I felt this offered me the best hope for staying alive indefinitely. Because each case of prostate cancer can be vastly different, it may not be the best option for everyone.

My treatment is now complete. The physical side effects continue, though very mildly. But sleep doesn’t come as easily. In the middle of the night, I lie awake wondering whether the treatment for my cancer – now in apparent remission – eradicated all the cancer cells. It’s not a sure thing; only time will tell.

I can’t erase the vision of my father drawing his final breath at home as he succumbed to a prostate cancer that had metastasized throughout his body resulting in a painful death. I don’t want to meet his fate.

It’s at times like these that you wonder what your purpose in life is. Photojournalism gave me a front-row seat to watching history unfold. I am forever grateful for the experiences I’ve had. But now I’ve also become more committed to championing other photojournalists whose work truly inspires me. And though many newspapers think they aren’t doing too well these days, there is no doubt that good photojournalism is alive and well.

Also, I feel an obligation to educate as many people as possible about prostate cancer because there is so much misleading information published in the mainstream media. Not only that – and this will sound arrogant – but I also believe I know more about prostate cancer than some family doctors. So, if you’re a man (or a man’s wife), read the following adapted version of the eMail I sent to friends and family.

Myth #1: “Few men die from prostate cancer.” 
In fact, prostate cancer is the second leading cause of cancer death in men. More than 30,000 died from it last year alone. The key factor to survival is to diagnose prostate cancer early enough before it has spread outside the prostate. If it’s metastasized in the bones or blood stream, the cancer can be treated but probably not cured; i.e., you will eventually die from it.

Myth #2: “Prostate cancer is an old man’s disease.”
Most cases of prostate cancer occur in men over 65. But I am certainly proof that it can occur much earlier. I was 49 when blood tests indicated that something was amiss. One doctor I know has several patients in their 30s with aggressive prostate cancer.

Myth #3: “I’m in good shape, eat healthy, don’t smoke, so I’ve got nothing to worry about.”
The truth is no one knows what causes prostate cancer. I’m in pretty good shape, I’ve never smoked, and I eat healthy, so it didn’t work for me. There seems to be a hereditary link, so if you have a father (like me) or brother who had prostate cancer, you’re much, much more likely to have it. African Americans also have prostate cancer at a much higher rate than white men. Asians have it at a much smaller rate but strangely enough, Asians in the U.S. have it at the same rate as everyone else. So that is some indication that diet plays a role.

Myth #4: “If my digital rectum exam is normal, I don’t need the PSA blood test.”
Think again. There has never been anything really abnormal during any of my annual DREs. Since 1999, I’ve supplemented the DRE by also having a PSA (prostate specific antigen) blood test. (The test itself is a simple blood test that can be done at the same time that your doctor is checking your cholesterol.) The PSA test measures a substance emitted both by the normal prostate gland and by cancerous tissue in the prostate gland. My PSA was much higher than normal during the last physical exam with my general physician. Because of the high PSA, my urologist performed a biopsy in early March. The results showed the cancer.

Most medical experts say to start having a DRE at 40 and PSA blood test at 50. Many now believe that those with a family history of prostate cancer or who are African American should have the PSA test beginning at 40. I began my PSA blood tests in my early 40s. My doctor resisted, but I insisted. You should too.

Recent studies have caused some controversy about the effectiveness of the PSA test, resulting in headlines like “Study Casts Doubt on Prostate Cancer Test.” In the past, “4” was always the magic number. That is, if the PSA reading is higher than 4.0 milligrams per milliliter of blood, then a urologist would perform a biopsy (which, unlike the PSA test, is somewhat painful and invasive). The new studies show that many men with PSAs higher than 4 have had biopsies that show no cancer. So the conclusion (wrong, in my mind) is that these ultimately unnecessary biopsies prove that PSA is not a good test for prostate cancer.

While not perfect, the PSA is still a very important test. Just as important is having a doctor who knows how to interpret the results of the test. Everyone’s anatomy is different. Everyone’s prostate is a different size. Educated urologists are looking not just at the number, but if and how fast the PSA is rising year to year. This is why it’s crucial to begin having an annual PSA test – so results can be compared from year to year. 

For example, someone might have a PSA higher than 4, but it might not be indicative of prostate cancer if the PSA is not rising or only rising incrementally year to year. Conversely, someone who has a PSA lower than 4 could have cancer if their PSA is rising significantly year to year. The so-called “PSA doubling time” (the rate of increase in PSA levels, expressed as the time it would take for a patient’s PSA level to double) has become an important marker in the progression of prostate cancer cells.

“Since prostate cancer is such a slow-growing cancer, is treatment really necessary?”
Prostate cancer IS slow growing. Many men in their 70s and 80s who are diagnosed with an early stage of prostate cancer do not have treatment because they are more likely to die of other causes before the prostate cancer kicks into high gear. But when you get high-grade prostate cancer at a young age and/or a biopsy shows aggressive cancer then you definitely need treatment right away if you want to live another 5 or 10 or 20 years.

“I heard surgery to remove the prostate is the ‘gold standard’ treatment for prostate cancer?”
Every case of prostate cancer is different, and treatment decisions must factor in age, health, stage of cancer, grade of cancer, chance of reoccurrence, life expectancy, side effects, etc. Surgery to treat prostate cancer has been the “gold standard” for many years.

Brachytherapy, where radiation seeds are implanted in the prostate, has become another “gold standard” treatment with survival rates similar to surgery. Sometimes brachytherapy is used in conjunction with external radiation to treat highly aggressive prostate cancer. There are several newer treatments as well.

“If a biopsy shows that you have prostate cancer, you should start your treatment right away!”
Waiting was one of the most difficult psychological challenges for me. I knew that I had cancer, that a tumor is growing bigger every day. “Let’s treat it now!” was my obvious first reaction. But as I said, every case of prostate cancer is different. I was better off taking the time to educate myself about prostate cancer and the possible treatments, to meet with various doctors, to undergo additional tests to determine the exact specifics of my cancer, and to talk with other prostate cancer patients via email, on the phone, and at support groups.

The decision-making process was the most stressful part of having prostate cancer. It is difficult to determine THE best treatment. My main goal, of course, was for long-term survival. But, as I wrote earlier, different doctors gave different advice about which treatment was best for me. Each treatment is a risk in some respects, and each treatment has adverse side effects. Scientific studies on different treatments provide similar success rates. And I’ve received both positive and negative testimonials from patients who have used the identical treatments. All these factors need to be weighed carefully.

Myth #5: “Trust your urologist.”
Like my former boss (President Ronald Reagan) used to say about his Soviet counterpart, “Trust, but verify.” Your urologist is likely a surgeon and if he discovers prostate cancer, he will likely recommend surgery. My urologist suggested either surgery or seed implants, but gave little information other than a basic synopsis of the two treatments. Other than performing a biopsy, he offered no additional testing. I discovered there were several tests (endorectal MRI and bone scan, to name just two) to better define whether my cancer had spread outside the prostate. I also educated myself by seeking other opinions not only with urologists but also with radiation oncologists.

In conclusion, if you have a history of prostate cancer in your family, and you’re older than 40, you should insist on having a PSA blood test in addition to the yearly DRE. African Americans should be tested early too. And even if you’re not in these two groups, consider having a PSA blood test earlier than your doctor recommends. Whatever you do, please have an annual physical exam.

Pete Souza’s photography can be seen online at www.petesouza.com. He's been an NPPA member since 1977.