I was diagnosed as a result of a routine PSA test. A (to me) very unimpressive urologist to whom I was referred performed a DRE (Digital Rectal Examination) (negative - though only because he did it too fast, other docs had no trouble palpating tumors on both sides of the prostate) and a biopsy, which the low bidder lab reported as cancer with Gleason 3+3 but a later, more experienced lab reported as 4+3.
I have the good luck to be a computer programmer at the U.S. National Cancer Institute. I went to my boss, an oncologist, who referred me to the Radiation Oncology department at NCI. They did a far more expert analysis of my problem and offered to treat me in a clinical trial of MRI guided High Dose Rate (HDR) brachytherapy with External Beam Radiation Therapy (EBRT). On the advice of other doctors and after seeing an article claiming that "intermediate risk" men did much better if Androgen Deprivation Therapy (ADT) were also used, I requested and received neo-adjuvant ADT. with the treatment. I received four months doses of Lupron, and two sessions of HDR, separated by five weeks of three dimensional conformal radiation therapy (3DCRT) EBRT.
The short term side effects were not too bad. They included aggravated hemorrhoids (from the DRE's I think as much as from the radiation), minor radiation burns to the skin (like sunburn), temporary loss of pubic hair, blood in semen, and most significantly, urinary restrictions that caused me to get up as much as seven times a night to urinate and to use Flomax to be able to urinate at all. My energy level declined significantly, possibly due to the ADT. I had the loss of libido and hot flushes common to ADT patients.
The only dangerous side effect I experienced was elevated liver enzymes which the doctors concluded was caused by the ADT and appeared to indicate liver damage. They took me off that treatment. I never experienced any liver related symptoms.
My main long term side effects are lowered potency and some Peyronie's Disease (internal scarring or fibrosis that keeps the penis from being straight in an erection.) I can have orgasms and still have a very satisfying sex life, but only rarely manage enough stiffness for penetration, and then only with the help of Viagra.
My PSA bounced around alarmingly after treatment, at one point going from 0.6 to 1.8 between readings. The radiation oncologist at NCI however said this occurred in about a third of his patients and I should wait it out, not getting ADT until we were sure it was a recurrence. Fortunately the PSA went down again. At the end of 4 years it was down to about 0.2 and after 5 years it went below 0.1. As of this writing, seven years after treatment, it's still below 0.1. So, knock on wood, it appears that my treatment was successful and I am cancer free.
I have continued to participate in prostate cancer newsgroups and have learned a great deal more than I knew before treatment. If I had to name the one single thing that I now believe to be most important to a patient facing treatment, it is to get the very best doctor and clinic available. I'd rather have a really good surgeon than a mediocre radiation oncologist and a really good radiation oncologist rather than a mediocre surgeon. There are many treatments that can work, but not all doctors are good at making them work.
I wish the best of luck to all of you who have this tricky and difficult to understand disease.
It is now over eight years since my treatment. It took about five years for my PSA to reach a nadir of 0.08. Since then it has risen slightly, once to 0.26, then back to 0.11. It think the small rise was more likely due to prostatitis than a recursion since I had other symptoms of prostatitis and, as I understand it, with radiation some living prostate tissue may remain.
ED did not develop right away. By five years after treatment it was very significant. Today it is almost impossible for me to get an erection. However, sex is still possible in other ways and is still most satisfactory, so I haven't tried the injections that might still work for me.
I continue to be involved in two prostate cancer support groups and continue to learn more about the disease. I'm very encouraged by the new drug discoveries - Abiraterone, MDV-3100, ARN-509 and possibly Provenge. I think that, if patients were able to get the best treatments now available the death rate from this disease would drop significantly. I encourage everyone who requires treatment to find the very best doctor they can find - whether it be a surgeon, radiation oncologist, or medical oncologist. I believe that the success rates from the best doctors are much better than the success rates from those who are not real prostate cancer specialists or who are not truly committed to their patients. Don't just accept treatment from the first doctor who offers it. Shop around if you can.
I wish the best of luck to all who may be reading this.
It's now almost ten years since treatment. The impotence that gradually developed has stayed with me and is, presumably, permanent, though I still enjoy sex as much as ever and as much as my aging body still permits.
I see that I didn't really say anything about why I chose radiation as my mode of treatment. I think the main reasons had more to do with my particular experiences than with any solid scientific analysis. The surgeon I was referred to scared me. I didn't think he was competent. The radiation oncologists that I met reassured me. I thought they were competent and caring. I had also been through a botched surgery once and I didn't like the idea of having someone put me to sleep and go to work on me with a scalpel. However the truth is that whether you get surgery or radiation or something else, you are at the mercy of the doctors. If they do a poor job they can probably hurt you just as much with x-rays or drugs as with a knife.
My advice to new patients is, first and foremost, try to find the most experienced, capable and committed doctor that you can. Look for someone who isn't just a urologist or a radiation oncologist. He or she should be a urologist who specializes in surgery for prostate cancer or a radiation oncologist who specializes in radiation treatment for prostate cancer. And for patients needing medical (e.g., hormone) therapy, look for a medical oncologist who specializes in prostate cancer. Real specialists are hard to find but they usually know a lot more than doctors who do a little of this and a little of that and aren't really following prostate cancer literature and don't have a wealth of experience in treating it.
It's now 10.5 years since my last radiation treatment. All still looks good.
I'm still here, still doing well, no recurrence in almost 12 years now.
Now at age 70 there is no change and I appear to be fine (knock on wood.)
Alan's e-mail address is: firstname.lastname@example.org