In May of 2005, my wife and I were getting ready to celebrate our 25th wedding anniversary with a trip to Italy, where we had lived for 6 months in 1990-91. My father had prostate cancer in his early 70s, so I had my PSA test done every July since I was 50 (in 1999). I missed my 2004 check-up due to an accident my wife had, but since I was in good health, I didn't worry about it.
I had no symptoms of prostate cancer but had the PSA blood test in May of 2005 to get back on schedule. My doctor called me with the results. In 19 months, my PSA had gone from 2.0 to 12.5. She urged me to see a urologist immediately. A biopsy showed I had extensive cancer throughout my prostate with a Gleason score of 8 (4+4).
Like most men, I was overwhelmed with the news. Family and friends suggested all the available treatment methods. I became extremely depressed. My family doctor prescribed Zoloft, which brought me out of my depression and which I used for about 9 months.
A family friend who is a medical doctor had had radiation treatment 4 year prior. He recommended surgery vs. radiation. In the perhaps naive hope that the cancer was still contained within the prostate and hadn't spread, I chose surgery without even talking to a radiology oncologist. My wife and I didn't like the first Urologist we met with, but did like and chose the second one.
My surgery was scheduled for June 23, 2005. We cancelled our Italy anniversary trip. On June 3rd, I had a mountain bike accident and broke my collar bone, two ribs, tore an ear and had a mild concussion. 2005 was definitely my Lance Armstrong year.
Before surgery, I asked my urologist if I would be able to have sex again after recovery. He said No, even though he had planned to spare one nerve bundle. I asked him if he could recommend a diet, vitamins or supplements. He said no. This should have raised red flags with me but it didn't immediately.
Surgery went well and I experienced no pain and was released after an overnight stay. The hospital where the surgery took place was in Denver, Colorado. Post surgery pathology showed my Gleason was a 9 (4+5). I had a catheter for about 10 days and only needed a light pad for about 4 days. I have had no incontinence problems for which I am very thankful.
30 days after surgery, I had a blood test which showed my PSA was 1.8. The urologist explained that this meant the cancer had spread. He told me he would start me on Lupron and Casodex and would think about recommending radiation to my prostate bed to try and kill the remaining cancer.
The Casodex did cause severe short term memory problems for me. When I stopped this drug 90 days later, the memory problems stopped.
After 90 days, my PSA was undetectable at < 0.1. My urologist said he would keep me on a 90 day schedule for Lupron shots and was still considering recommending radiation to the prostate bed.
Note: I lost about 15 lbs after surgery, going from 173 pounds to 158 pounds. I am 5' 11" tall.
On December 30, 2005, my wife was diagnosed with breast cancer. We were devastated. For the next 5 months we focused on her treatment and I put my concerns about myself on the back burner.
When my wife was through her treatments, I decided I had to learn a lot more about the disease I had, because it wasn't going to go away and I was losing confidence in my urologist. I started reading more books and articles about prostate cancer and joined an email support group (PROSTATE@LISTSERV.ACOR.ORG).
My urologist never told me that Lupron could cause bone loss. My primary care Doctor ordered a bone density test and it showed I had osteopenia. She prescribed Fosomax for me. I had asked my urologist for the names of oncologists he could recommend as I wanted to make them a part of my team, but he wouldn't give me any, saying it wasn't necessary. Another red flag that I was no longer ignoring.
As I approached my one year anniversary of being on Lupron, I made appointments with 2 oncologists and 2 radiation oncologists to discuss whether radiation was the next step for me.
Note: I gained about 15 pounds once I started on Lupron.
On August 1, 2006, during my quarterly visit with my urologist to get my Lupron shot, I asked him again about radiation. He said that he and his partners were building a new facility and that they would have a radiation department in it. Therefore, he wanted me to wait a year and get the radiation done then. I knew at that point that this man was looking at me with dollar signs in his eyes. My wife and I left and never went back.
I saw the 4 doctors within the next 2 weeks. All 4 said that the Gold Standard of treatment in cases like mine was to have the radiation done within 4-5 months of surgery. None of them could believe my urologist was stringing me out. I chose the radiation oncologist I wanted and he said it would be 35 treatments to the prostate bed, 5 days a week for 7 weeks starting at the end of September, 2006. I also switched doctors to a medical oncologist who specialized in prostate cancer at the University of Colorado.
The first two weeks of radiation went pretty easy, but the next 5 weeks were tough with daily diarrhea and fatigue. At the point when I was most discouraged, I read a book by Dr Charles Myers called "Beating Prostate Cancer with Hormonal Therapy and Diet". I was so excited by this book that I read it in one sitting. The book described Dr Myers approach to treating prostate cancer with hormones, diet, vitamins, supplements and exercise. These were the things I was interested in but couldn't find anyone in Denver to help me. The fact that Dr Myers was a prostate cancer survivor increased his credibility with me.
I had read one of his other books the year before. A friend who was being treated by him recommended it. The book was about how our western diet was largely to blame for prostate cancer and how to eat to help prevent it's recurrence.
After my radiation was done, I went back to my oncologist in Denver on December 1, 2006 to get a Lupron shot (which turned out to be my last shot) and to talk to him about Dr Myers approach to treatment. The oncologist was familiar with Dr Myers and said "he was on the fringe of acceptable medical practice in this country." I was furious with this doctor with his comments.
I kept thinking about a comment from Michael Milliken that really impacted me. Milliken was the junk bond king of the 1980s. In 1993 he was diagnosed with prostate cancer and given 18 months to live. He was convinced of the correlation between diet and cancer. He said that he didn't have the time to wait til science proved this. He went on a very low fat diet. He is alive and healthy today (May 25, 2009). I felt that with a Gleason 9, I didn't have time on my side either.
My wife and I discussed it and she said what are you waiting for. Call Dr Myers and make an appointment. Dr Myers lives and works in Charlottesville, VA. He only takes new patients after they fill out a lengthy patient profile and then he only takes men that have serious cases of the disease. I was accepted by him and my appointment was made for January, 2007.
We both flew to Virginia for the appointment. After examining me, he brought my wife in to talk to the both of us. He said that if I was willing to follow his recommended diet along with the drugs he wanted to prescribe, and the supplements and to exercise, he thought he could have me in remission in 3 years. This is the first doctor that gave my wife and me any hope. We committed to him to do just that.
As of today, May 25, 2009 my PSA is still undetectable. I see Dr Myers once a year for an annual check-up and I see a local Denver oncologist quarterly for blood tests. I have lost 17 pounds over the last two years and currently weigh 157 pounds which is where I plan to stay. I eat a Mediterranean style diet, and use the vitamins, supplements and 3 prescription drugs that Dr Myers wants me to. I try and exercise daily by bike riding, skiing, tennis or on a treadmill.
June 18, 2010 Well it's been 5 years since diagnosis and surgery and I'm so happy to say I am here, healthy and active.
Last month my wife and I made our annual visit to Charlottesville, VA from Colorado to visit my oncologist, Dr Charles Myers. My PSA is still <0.01 and my overall health is excellent. I follow Dr Myers advice on diet, vitamins/supplements, and exercise. He has me on 3 prescription drugs, but no hormones like Lupron.
My wife and I celebrated our 30th anniversary 11 days ago. In October we are going to England and Scotland for 3 weeks. That is where we celebrated our honeymoon way back when, but this time we don't plan to sleep on the floor of friends homes.
My best to all!
July 6, 2011: My wife and I traveled from Denver, Colorado to Charlottesville, Va in mid-May, 2011 for my annual exam by Dr. Snuffy Myers.
Six years after surgery, hormonal treatment and radiation, due to a Gleason 9, my PSA is undetectable. The Doctor is pleased with my health and my wife and I couldn't be happier.
I do follow Dr Myers directions for diet, exercise, weight control and recommended vitamins/supplements. At age 62, I only weigh five pounds more than I did when I was 18.
After the exam, we traveled by train to Philadelphia for a five day visit and to happily celebrate our situation. Had a grand time in the city, visiting museums and Revolutionary War sites, and eating and drinking our way around the city. Yes, I did cheat a little on the diet, but the food was worth it. Only travesty was my beloved Colorado Rockies lost to the Philadelphia Phillies with us in the stands.
That's it for now. My best to all.
Saw Dr Myers in mid-May for my annual exam. I am doing fine on all fronts, in remission and overall good health.
I asked Dr Myers if I could go to two blood tests a year from 4 now that I am seven years out from initial diagnosis. He said no due to the fact that I had such a high Gleason score (9).
Left Dr Myers in a great mood and continued our journeys on to Italy. Spent a 17 day holiday there and had a wonderful time.
I saw Dr Myers in Charlottesville, VA on May 3rd for my annual checkup.
After the physical, Dr Myers told my wife and me that I had been in remission long enough in his opinion that it was no longer necessary to see him anymore, unless my PSA were to rise. He said I was to stay on the prescription medicines I've been using and to still have my blood tested every 3 months.
My wife and I were thrilled to hear this. We do feel blessed. With a Gleason 9, I truly didn't expect to be doing this well 8 years after the initial diagnosis.
I hope my story brings hope and encouragement to other men and their loved ones.
After our time with Dr Myers, we traveled by car to Asheville, NC, Charleston, SC and Savannah, Georgia. First time in each of these cities. We loved them and hope each of you that reads this get to visit them some day.
Well, another year has passed and I am still blessed. My PSA is undetectable, my health is excellent and I am fully enjoying life. It is now 9 years since my diagnosis with a Gleason 4+5.
I have cut back my blood tests from 4 times a year to 3 times but other than that I have made no changes. I am still taking two prescription drugs and the vitamins recommended by Dr Myers. Although I no longer see Dr Myers in Charlottesville, I do see a local Denver oncologist as a precaution. My only long term side effect from my surgery and radiation treatments is ED which is helped by taking Cialis.
Till next year,
It is now 10 years since my initial diagnosis of a Gleason 4+5. I am very thankful and I hope my story gives encouragement to other men with this disease and their partners.
During this past year I have spoken to several men who were diagnosed with high Gleason scores. In two cases, the doctors they consulted with gave them very little hope even though with one man, there was no evidence of spread of the cancer. My opinion and what I told these men was to go find a different doctor. In these last 10 years there have been significant new treatments approved for prostate cancer and there are more in trials. There are many reasons why the doctors should be encouraging these new patients and not telling them to give up before treatments are even started.
So nice to be able to report that I still have an undetectable PSA and am in very good health. Only one item of interest to report. My wife and I volunteer with a children's cancer foundation, called Shining Stars. Our biggest event of the year is taking about 70 children from around the country to Aspen, CO for a week in March where they are taught to ski or snowboard. The kids come without their parents, always love the adventure and mostly love just being able to be normal kids for a week and not have to explain their disease.
2 weeks before the camp I had a dental implant. My left side of the face was swollen as to be expected. By the 7th day though, my wife said my face was not right and she thought I had had a stroke. That was a Sunday night. She wanted me to go to the ER but I said I would call my doctor the next morning as I felt ok. Monday I made the call and the doctor's receptionist told me to go to the ER immediately.
6 hours later, after a cat scan and an MRI, the ER doctor told me the right side of my face was paralyzed and that I had a condition called Bell's Palsey. They think it is caused by a virus and only 1/2 of the face is paralyzed. It can last from several weeks to several months and can cause permanent paralysis in a small number of cases. I was very lucky. They gave me a steroid and the paralysis was gone in a few days.
I then asked the doctor if I could be around children with cancer since I had this virus in me. He said yes, I was fine to go. My wife then called the doctor in charge of the Cancer Foundation, and after checking with other specialists, I was told I could go to Aspen. I was thrilled as the week there with the kids is what my wife and I look forward to all year.
Another year and I am still in great health with an undetectable PSA. I do know I am extremely lucky and wake up each morning feeling blessed. I am now a 12 year survivor of a Gleason 4+5 cancer.
My wife and I stay active in retirement by volunteering at the Children's Hospital and with a pediatric cancer foundation.
If you're reading this, stay positive, find the best doctors you can, be involved in your treatments and try and be as knowledgeable about this disease as you can.
David's e-mail address is: jnjsq2 AT me.com (replace "AT" with "@")