THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
My primary care doctor referred me to a Urologist after my PSA went to 4.3 on June 4 2011. I got a copy of my lab work prior to going to the Urologist and it indicated a (% free PSA) of 9%. It also said that I had 55% chance of PCa. My actual risk was higher since I have positive family history. I did a lot of research on PCa and went to the Urologist with written questions. My Urologist did not answer any of my questions and said come back in six months with a new PSA test. He actually took my copy of my lab work and scribbled out the (% free PSA;) value. I did more research and could not find any reason why he totally dismissed the (% free PSA) value. I know it is not totally reliable but it should not be ignored.
My research indicated that another test was available that was more selective but less sensitive than the PSA test so I decided to have it done. The test is called a PCA-3 test and is done with a urine sample after a vigorous DRE (Digital Rectal Examination). My test came back positive (72). I changed Urologist and had a biopsy that came up with a Gleason 6 (3+3) with a T2a clinical stage.
I am leaning toward proton therapy but have recently decided to look at AS.
I have decided to go with AS.
My last PSA was in December (3.5). It actually declined from 4.3 at diagnosis in September. I joined a prostate support group and am still learning.
I had to explain to my oldest daughter that I do not have a death wish by making this choice. I am following a strict protocol and will get treatment when I break the parameters of this protocol. She was spooked by the death of Steve Jobs and magical thinking.
The oncologist that is following me says their patients are averaging 8 years on AS before treatment is recommended. I will be happy if I get half of that average. [I suggested to Fred that he read this piece.]
I am hoping that IMPT (Image Guided Proton Therapy) becomes available in the US in the next couple of years.
My PSA has remained stable at 3.9 for apx 1 year and I had a second needle biopsy that indicated progression from Gleason 6 (3+3) at diagnosis on September 2011 to Gleason 7(3+4) on August 2012. I have done a lot of research on this disease. When my prostate oncologist recommended that I should choose a treatment, his preference was brachy or HT. I was unaware that HT was a valid choice for primary treatment for a man with my numbers. The research indicated that apx 1/3 of men that have ADT3 have a durable remission. I asked the doc "If I do HT, can you tell me when I will need to make another decision whether to have a second round of HT or do brachy?" He said yes. I said, "Are you certain that I will have less disease when I need to make that next decision"? He said yes. I started ADT3 on September 2012. My side effects are very mild hot flashes, fatigue and loss of libido.
I think that all men diagnosed with PCa should get a consult with a medical oncologist specializing in prostate cancer before they make a treatment choice.
After 4 months of ADT3 at Dr Sholtz's office I decided to move my treatment to Dr Lebowitz's office. Dr Lebowitz was treating his patients with 150mg of cassodex instead of 50mg. He also added metformin, crestor, celebrex and avadart. My own research indicated that these agents could be beneficial in the fight against prostate cancer. I completed my 13 months of ADT3 with Dr Lebowitz in November of 2013. I had a color doppler ultrasound with biopsy in November of 2013 by Duke Bahn. It was a targeted 6 core biopsy and all cores contained "NO" prostate cancer. I was told that more than half of his clinically localized prostate cancer patients that choose to have a biopsy at the end of ADT3 treatment have a negative biopsy.
He also offers high dose testosterone treatment for selected patients. He indicated that I qualified and I have been on this treatment for apx 2 weeks. Needless to say I feel great. Libito, alertness, erectile function, strength....etc are all good. The thinking behind HDTR is that any prostate cells remaining are going to be castrate resistant and hitting them with HDTR will either kill them or cause them to become more androgen dependent. I have read the studies and they are compelling. Not all men respond favorably so you need to be monitored by an expert oncologist specializing in prostate cancer. The statistics indicate that I have an 85% chance of going 8 years before I need to make a decision to retreat with ADT3 or I could choose a standard primary treatment.
I completed my ADT3 treatment in November 2013. I had a biopsy that found "no" cancer at the end of this treatment. I started high dose Testosterone supplementation in December 2013. My current T is around 1800. My PSA climbed from undetectable in November 2013 to present day .5. It has remained stable for the last 6 months. Since I still have a prostate my PSA is still below normal for a man with a 30gram prostate. All side effects of ADT3 were gone after starting T replacement. I feel very good and expect to go many years before making another treatment decision.
Life is good. MRI and TRUS are negative and PSA is hovering around 0.8. The high dose T replacement around (1800 to 3000) is amazing. I feel good and my weight is approaching my high school athletic weight.
Fred's e-mail address is: weirdwood1 AT gmail.com (replace "AT" with "@")
NOTE: Fred has not updated his story for more than 15 months, so you may not receive any response from him.