Pete Souza was diagnosed and treated for prostate cancer in 2005. From his extensive research, he offers this personal note about prostate cancer and how he approached his particular case:
Myth #1: "No one dies from prostate cancer."
In fact, prostate cancer is the second leading cause of cancer death in men. More than 30,000 men died from it last year alone. My dad died of prostate cancer in 1999. The key factor to survival is to diagnose prostate cancer early before it has spread outside the prostate. If it's metastasized in the bones or blood stream, the cancer can be treated but likely not cured.
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.
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 some cases of prostate cancer are aggressive which can be indicated by a biopsy when the cancer is assigned what's called a Gleason score. With a high Gleason score, one would want to begin treatment sooner rather than later.
Myth #3: "If my digital rectum exam is normal, I don't need the PSA blood test.
Think again. If you are older than 50, or older than 40 if there's a history of prostate cancer in your family, then you need to supplement the DRE by also having a PSA (prostate specific antigen) blood test. The PSA test measures a substance emitted both by the normal prostate gland and by cancerous tissue in the prostate gland.
New scientific studies have led to misleading headlines like "Study Casts Doubt on Prostate Cancer Test." It's disappointing to me when I see the mainstream media--of which I belong--reporting on new studies without a firm understanding of PSA and prostate cancer.
The PSA is still THE most important test in discovering whether someone might have prostate cancer. Also extremely important is having a doctor who knows how to interpret the results of the test. In the past, four was always the magic number. That is, if the PSA reading was higher than 4.0 milligrams per milliliter of blood, then an urologist would order a biopsy. Newer studies have shown that four is not always the magic number.
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 is crucial to begin having an annual PSA test; results can be compared from 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.
If you are in one of the high-risk groups (family history of PCa or African American), I strongly urge you to read more about this yourself and to quiz your urologist to see if he is up-to-date on this information. I consider myself a good source on the details of PSA, but I am by no means an expert in science or medicine.
Myth #4: "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. 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. As such, I have changed my diet to eliminate red meat,; decreased overall products with high sugar content and/or high saturated fat; and have increased my intake of fruits and vegetables.
"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 had been the gold standard for many years. Brachytherapy, where radiation seeds are implanted in the prostate, has become another gold standard treatment in the past decade with survival rates similar to surgery. Sometimes brachytherapy is used in conjunction with external radiation to treat highly aggressive prostate cancer (this is the treatment I underwent). There are several newer treatments as well.
"If I have prostate cancer, how do I decide which treatment is best?"
Waiting to decide which treatment to undergo is one of the most difficult psychological challenges for anyone. You know that you have cancer, that a tumor is growing bigger every day. "Let's treat it now!" is an obvious first reaction. But as I said, every case of prostate cancer is different. One is better off taking the time to educate himself about prostate cancer and the possible treatments, to meet with various doctors, to undergo additional tests to determine the exact specifics of their cancer, and to talk with other prostate cancer patients via email, on the phone, and at support groups (see more information listed below). Your main goal, of course, is for long-term survival. But different doctors will likely give different advice about which treatment is best. 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 you will likely receive both positive and negative testimonials from patients who have used the identical treatments. One has to weigh all these factors carefully.
Myth #5: "Trust your urologist."
Like President Reagan used to say about his Soviet counterpart, Mikhail Gorbachev, "Trust, but verify."
Your urologist is likely a surgeon and if he discovers PCa (insider shorthand for 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 (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 with not only urologists but with radiation oncologists.
Final words: 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 are 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.
What to do if you’re diagnosed with prostate cancer
I am not a medical expert or a science expert. I am only an informed patient who was treated in 2005. From my personal experience, these are my qualified suggestions of important things to do if you are diagnosed with prostate cancer.
• Purchase or check-out from the library these five books:
1. Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer by Dr. Patrick Walsh and Janet Worthington.
2. A Primer on Prostate Cancer, The Empowered Patient’s Guide by Dr. Stephen Strum and Donna Pagliano.
3. The Prostate Cancer Treatment Book edited by Drs. Peter Grimm, John Blasko and John Sylvester.
4. What your Doctor May NOT Tell You About Prostate Cancer by Dr. Glenn Bubley.
5. Dr. Peter Scardino’s Prostate Book by Dr. Peter Scardino.
• Read the archives of the different Internet discussion groups on
www.Prostatepointers.org
• Read information on the reputable web sites listed later in the appendix.
• Make a follow-up appointment with your urologist after reading some of the above material.
• If there is a noted radiation oncologist in your area, make an appointment with him within the next few weeks.
• Find a prostate cancer support group to attend in your area.
Useful Internet Websites
****FOUR STARS
www.cancer.gov/CancerInformation/understanding-prostate-cancer-treatment
National Cancer Institute. Extensive information on understanding prostate cancer and treatment options. Includes useful diagrams.
www.prostatepointers.org
Highly recommended starting point for numerous, and valuable, mailing lists. “Seedpods” is a valuable discussion group for those who are considering, or have undergone, brachytherapy. “P2P” (Patient to Physician) provides the opportunity for patients to post questions with accompanying medical history; specialists in the field of prostate cancer offer specific replies. “RP” offers a discussion group for those who are considering, or have undergone, a radical prostatectomy. Most of the mailing lists are archived.
www.prostatecancerfoundation.org
The Prostate Cancer Foundation funds high-impact research to find better treatments and a cure for prostate cancer. Can download “Nutrition and Prostate Cancer, ” a 40-page guide, at no charge.
urology.jhu.edu/prostate/cancer.php
The James Buchanan Brady Urological Institute at Johns Hopkins. Can access phone numbers for various doctors including Patrick Walsh. Partin Tables can also be accessed here.
www.cancercenter.com/prostate-cancer.cfm
The Cancer Treatment Centers of America. Has good overview info on prostate cancer as well as conventional treatments including surgery, radiation therapy, chemotherapy, hormone therapy, and immunotherapy.
www.prostate-cancer.org/index.html
The Prostate Cancer Research Institute, a not-for-profit public charity, which in 2005 help sponsor the National Conference on Prostate Cancer.
www.seattleprostateinst.com
The Seattle Prostate Institute. The small group of doctors here are innovators in the treatment of brachytherapy having done more than 7,000 seed implant procedures. They also have more than 15 years of cancer research to its credit. Includes contact info for Drs. John Blasko and Peter Grimm.
www.dattoli.com
The Dattoli Cancer Center and Brachytherapy Research Institute in Sarasota, Fla.. Dr. Michael Dattoli is one of the more high-profile practioners of seed implants and has published numerous research papers on brachytherapy.
www.ustoo.com/
Us TOO International is a prostate cancer education and support network started in 1990 by prostate cancer survivors to serve prostate cancer survivors, their spouses/partners and families. Good statistical data. Blue prostate cancer wristbands may be ordered from this website. A co-sponsor of the 2005 National Conference on Prostate Cancer.
www.bostwicklaboratories.com
Bostwick Labs is one of the premier pathology labs in the country and used by many doctors to examine your biopsy slides. They are often recommended as a place to send your slides for a second opinion. Includes contact information.
***THREE STARS
www.pcacoalition.org
Mission Statement: The National Prostate Cancer Coalition (NPCC) sets the standard for rapidly reducing the burden of prostate cancer on American men and their families through awareness, outreach, and advocacy.
www.henryfordhealth.org/body.cfm?id=41159
Henry Ford Health System in Michigan. Vast information on prostate cancer. Includes details on robotic laparoscopic prostatectomy surgery performed at the Vattikuti Institute Prostatectomy.
www.prostrcision.com/
The Radiotherapy Clinics of Georgia. Contact info for Dr. Frank Critz, a very high-profile doctor who performs brachytherapy. His protocol includes radioactive iodine (I-125) seed implant followed by linear accelerator irradiation using either conformal beam or intensity modulated radiotherapy (IMRT). Good Q&A section. Can order videotape upon request.
www.mskcc.org/mskcc/html/10088.cfm
Memorial Sloan-Kettering Cancer Center. Contains useful online Prostate Nomogram to calculate your potential treatment choices by plugging in your Gleason score and PSA.
www.phoenix5.org
Phoenix5 is a non-profit organization, which helps men and their companions overcome the effects of prostate cancer. Basic information on prostate cancer. Excellent first-person stories from both men with PCa and their spouses. Links to articles on PCa, but quite outdated.
www.prostateforum.com
Home base for a monthly newsletter published by Dr. Charles “Snuffy” Myers. Newsletter is currently $46 per year and can either be mailed or emailed in PDF format. Website also includes valuable information.
www.llu.edu/proton
Loma Linda University Medical Center’s Proton Treatment Center in Loma Linda, Calif.
www.drcatalona.com
Dr. William Catalona is well-known urologist based at Northwestern Memorial Hospital in Chicago. Also affiliated with Urological Research Foundation. Website links to journal articles, a Q&A section with 683 current entries, and contact info for Dr. Catalona.
www.davinciprostatectomy.com/hospitals.html
Contains list of doctors/hospitals that use the da Vinci Surgical System for robotic prostatectomy.
www.americanbrachytherapy.org
The American Brachytherapy Society. Contains membership list of doctors by state presumably practicing brachytherapy.
www.brachytherapy.com/
Valuable for those considering High Dose Rate (HDR) brachytherapy. Includes link to Andy Grove’s first-person article on his prostate cancer as published in Fortune Magazine.