My story starts years before my diagnosis. In 1997 I turned 50 and had a routine physical. When I asked about a PSA test, my HMO doctor told me he did not put much stock in the PSA tests and did not order one. Being healthy, I did not go to the doctor every year, so it was November 2002 when I had another routine physical. My PSA came in at 5.6.
I was referred to a urologist who said we would do another PSA in six months. In February 2003 it was 6.3 and I had my first biopsy which was negative. I should point out that all my DREs were negative too, all the way up to my diagnosis in 2006. By September 2003, it had risen to 9.6 and I had a second biopsy - again negative. My PSA then went down for the next year, to 7.9 in March 2004 and 8.9 in September and the urologist did not feel the need for another biopsy.
Then in March 2005 my PSA rose to 12.0 and I had a third biopsy - again negative. By November of 2005, it jumped to 16.0! An MD friend told me to ask for a "free PSA" blood test. In December my PSA had again jumped to 22.9 with a free PSA of 3.6%. A free PSA under 25% is usually indicative of prostate cancer so my 3.6% number was a huge red flag.
When I met with my urologist, he seemed to finally have woken up to the high numbers. He had never mentioned doing a free PSA. He said in the next biopsy they would take more core samples - and use lidocain (which he had not done before). The biopsy was done on January 10, 2006 by another urologist and revealed a Gleason of 8 with 1/9 cores on the right at 20% cancer and 1/9 on the left at 5% cancer. T1C, stage A. I had a CT bone scan on January 31 and a DEXA bone scan on February 2 - both negative.
In the next few weeks I read five books on prostate cancer. I choose the urologist who had done the last biopsy for a second opinion and he supported the treatment option of radiation and hormonal therapy. My numbers were so high that they felt surgery was not an option - because odds were the cancer was already out of the capsule. I was sent for a consult with a radiologist and he support their treatment suggestions.
When I went met with my urologist on February 14, I told him I would go with their treatment plan. He told me I would get my first Lupron injection that same day. I informed him I wanted Casodex first to counter the spike in testosterone the initial injection of Lupron typically causes. He said it was not necessary since my PSA was so high. He also refused to do another PSA and testosterone which I wanted for a baseline before starting treatment. After arguing, I got my two weeks of Flutamide (generic Casodex). On February 28 I received my first Lupron injection, which I would get every four months for 2 to 2 1/2 years.
Another PSA in early April showed it had reduced to 9.0. On May 2nd, I started two months, 40 treatments, of radiation (3D conformal and IMRT) to a level of 7200 Gys. My radiation treatment was fairly uneventful. I had issues with fatigue and frequent urination, especially at night, as treatments progressed.
I pressed the radiologist for additional radiation since studies show it gives better long term results with high Gleason and PSA numbers. He refused even though he had mentioned it when we first met.
In June 2006, I sent my cores to Dr. Oppenheimer for a second opinion. My Gleason was downgraded from an 8 to a 7 (3+4) and three additional lab test, DNA Ploidy, p53, and Bcl-2, all came back positive in my favor.
I have continued on Lupron through February 2008. Every three months I have another PSA and testosterone lab done. During the two year since diagnosed, my PSA has stayed < 0.1 and testosterone < 20. A side effect has been tiredness and fatigue if trying to exert myself - so I have not run since, a sport I had enjoyed for years. In fact, I ran a 50km (31 miles) trail race near Lake Tahoe six months before my diagnosis. I also had yearly DEXA bone scans.
My first urologist was uninformed and made bad choices about my care. In retrospect, I should have filed a complaint letter against him with the HMO. After I started treatment I changed to the one who had done my fourth biopsy. He is much easier to work with but is still somewhat ill-informed about treatment options.
I finished radiation the end of June 2006. Two months later my PSA was < 0.1. I stayed on Lupron for two years, ending March 1, 2008. I experienced no hot flashes, but was tired and unable to run, my favorite sport before my diagnosis.
I have been doing PSA and testosterone reading every 90 days. My PSA stayed at < 0.1 until March 1, 2009 when it registered 0.1. Then on June 1 it rose to 0.2. It held there with my latest test September 1, 2009.
I have begun to experience swelling to my right breast, It manifested itself as tenderness and pain beneath the nipple. After a mammogram it was diagnosed as "Symmetric crease of right retroareolar density. There are no masses or suspicious calcifications. Impression: Unilateral gynecomastia." It is attributed to my two years of testosterone deprivation while I was on Lupron. Two years when estrogen can take over.
I am investigating taking the herb turmeric as men have told me it helps with pain and might even reduce or prevent further swelling.
Just short of five years post diagnosis and my PSA is 0.1. I am fortunate.
Overall I am healthy - save for extra weight that has been hard to get rid of. Every three months I get my PSA and testosterone checked.
I have no problems getting an erection.
Since my last update a year ago, my PSA has remained the same at 0.1. I have transitioned to PSA checks at six month intervals rather than every three months. Met with my urologist in December and we were happy with my outcome so far. I had radiation for two months with two years of Lupron. I am six years out and am holding well. Thanks for this website.
My diagnosis was in January 2006. At that time, my PSA was 22.9 and on my fourth biopsy the cancer was discovered. My Gleason was 8 but later when I send my cores for further analysis by Oppenheimer, a prostate cancer specialists, it was downgraded to a 7. One core had 15% and another 2%.
I underwent two months of radiation and spent two years on Lupron. My PSA tracked under 0.1 for almost three years. Since march of 2009, it has been either 0.1 or 0.2. After doing PSA checks quarterly, I changed to twice a year, and and now doing them yearly.
I am thankful that my PSA is holding.
Since my last update in 2013, I had my PSA checked once and thankfully, it register <0.1! After 8-1/2 years, I am blessed to require no further treatments and to be healthy. I retired in spring of 2013, bought a carbon-fiber road bike and began riding. My weight is down almost 30 pounds, my blood pressure is down and I am coming off my hypertension medication, and my heart rate ranges from the mid-40s to mid-50s. I feel great. Before my cancer, I ran ultra-marathons. Once I started Lupron and had radiation, I found I could not run the way I had. Even coming off Lupron after two years, I never found the time to get back into running with my job and commute. Having biked as a teen, I choose that as my current exercise routine. I typically bike 5-6 days a week and recently rode 276 miles in a 24-hour benefit ride. Yes, 8 1/2 years is good, but I don't take my health for granted. Staying healthy requires work. Proper diet and exercise are important.
In August 2006, after two months of radiation and four months of Lupron, my PSA declined from 21.9 down to <0.1. After that, I continued on Lupron for another 20 months. During that time my PSA stayed at <0.1. Since then, my PSA has been as high as 0.2 (the last time was April 2013). For the past two years, it has held at <0.1. It's tested yearly with my annual physical in May. I am currently 68 years old. My exercise is working in the garden, golf, and road bike riding (7000 miles in 2014). I remain healthy and am thankful for the clear years.
At age 69, I am fortunate to be a 10-1/2 year prostate cancer survivor. My PSA has never been higher than 0.2 and for the past 3-1/2 years, has held at 0.1. I am healthy and ride my road bike around 4500 miles a year and golf weekly. I have a hard time holding an erection but can get them.
John's e-mail address is: john AT johnvonhof.com (replace "AT" with "@")