THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2020 SO THERE IS NO UPDATE.
I have had BPH for a very long time, probably since I was a teenager. It was finally formally diagnosed after I turned 50, and my Urologist of that time treated me with Proscar and Flowmax to ease the urination. This went on for 11 years, and I even stopped seeing the Urologist. At 61, this condition suddenly worsened and there were times that I could stand in front of the urinoir for 15, 20 minutes waiting for a few drops to come out. So my GP referred me back to another Urologist. He detected a small stone that was stuck in my bladder outlet and suggested a TURP which would get rid of the stone and at the same time of the BPH. The TuRP got rid of all my urinary symptoms, but also revealed a very small amount (<5%) of malignant cells. The Urologist suggested Active Surveillance and had me return each 4 months for a PSA check. The PSA kept creeping up slowly over the following years. I was hoping that it would remain in check to avoid treatment and all the related side effects. In January 2016 I had a prostate biopsy (super painful) which had negative results. In December 2017, however, the PSA showed 14.3, and the Urologist told me it was time to treat the cancer. After consulting with his fellow Urologists, they proposed a treatment of EBRT and ADT. The reason for this advise was the fact that I had walked around a few years after initial diagnosis without treatment. Due to this, they expected EBRT + ADR to be a surer success then prostatectomy. The hormone therapy was started on 16 January 2018 and brought my PSA down to 1.8 in 2 weeks. A CT scan showed no signs of meta's. After 1 month of taking the Androcur pills (200 mg/day), I had my first Lucrin Depot injection on 15 February 2018, and was then referred to the radiation therapist to start radiation treatment. The treatment will probably start newt week or the week after that. In May 2018 I have the next appointment scheduled with the Urologist for a PSA check and the next Lucrin Depot injection.
The radiation treatment has started on March 27th, 2018. The treatments are daily except the weekends and for a duration of two months. Before each treatment I am precisely lined up with aid of 3 tiny tattoos and laser guidance, and after that, the radiation treatment itself takes about 5 minutes. On average, I am back on the street within 15 minutes. Side effects of the radiation up to now have been a light irritation in the bladder. Side effects of the ADT (hormone therapy) have been more severe and include a light fatigue and a total loss of libido (which may, or may not be temporal). Basically though, I am able to carry on with my daily routine without any problems.
I have undergone the Radiation Treatment for a period of 8 weeks. There are no side effects worth mentioning. The sub-treatment of hormone therapy has caused an initial loss of libido. The libido, however, has returned for a great deal while still having the radiation - and the hormone treatments. My expectations are that after completion of the hormone treatment at the end of this year, the libido will be fully restored. The PSA at the end of the radiation treatment measured 0.4 ng/ml.
Today, I had my checkup with my Urologist. He was quite pleased with the results of my blood test. The PSA has further dropped to a value of 0.2.
He is, however, concerned for relapse after completion of the Androgen Deprivation Therapy due to the aggressiveness of the cancer cells I had. For this reason, he decided to prolong the therapy with an additional 18 months to a total duration of 2.5 years. Taking into account that after stopping the therapy, it will take approx 1 year for the side effects to wear out, this gives a total duration of the side effects of 3.5 years. So it will be well into mid 2021 before I am back to normal. This Androgen Deprivation Therapy is turning into a psychological nightmare. The purpose of this therapy is to eliminate the breeding ground for cancer cells by reducing the testosterone level in the body to zero. The effects of low testosterone are primarily a low energy level and very low libido. On top of that the therapy is also giving me an ever increasing short-temperedness and impulsive behavior. I can be very glad, however, as all these side effects are temporary and will fully wear out once I stop the medication.
As mentioned already, the radiation therapy has given me no side effects. The prostate is very effectively destroyed without harming too much of healthy surrounding tissue due to the use of CT Scan guidance and laser alignment, which are tools that give the treatment a very high precision.
All in all I am very grateful. Grateful for the added years, grateful that the therapies have not interrupted my life, grateful that I can share my story for the benefit of future generations.
I had my follow up visit today October 30th 2018, with my Urologist. The PSA result dropped to an undetectable level. I received my 4th injection with Lucrin Depot, and there are 4 more to go. The earlier mentioned psychological side effects like short-temperedness and impulsiveness, have largely have been overcome despite continuation of the medication, and I am now back to my stable self. The only on-going side effect of the whole treatment is the low libido. I am counting that this will also go back to normal after completion of the therapy and discontinuation of the medication.
I had my latest visit to the Urologist on April 30th, 2019. My PSA is still undetectable. He gave me my Lucrin Depot injection to continue with the Androgen Deprivation Therapy. Continuing side effects of this therapy are a low libido and hot flushes. I had the main treatment (radiation therapy) one year ago and up to now there are no delayed side effects worth mentioning.
It is worth mentioning that since my initial diagnosis in 2014, I endured 4 years of (stressful) active surveillance before treatment became inevitable. Given the relative absence of side effects form the radiation therapy, it would, in hindsight, have been better in my case to proceed with treatment immediately following the diagnosis. I was present in the decision making, however, and I have seen how the treatment risks were carefully weighed against the benefits, based on statistics and previous experience.
On July 23rd 2019, I had my follow up visit with my Urologist. My PSA went up from <0.1 to 0.5. The Urologist ordered a urine culture to rule out the possibility of an infection and other than that requested me back in 3 months with the next PSA result to determine further action.
