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Headshot of AS Patient Thrainn Thorvaldsson

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The Tale of an Icelandic journey from AS to treatment

My original story was written in February 2019 – Patient Stories Thrainn Thorvaldsson But what has happened since then?

My PSA level rose rapidly. In 2018 my PSA was around 7 to 8. In April 2019 my PSA had risen to 14.3 and I asked for an MRI scan at the National Hospital in Reykjavik Iceland.

I was informed that the finding showed that the cancer had spread beyond the gland. My urologist recommended Da Vinci robotic surgery to remove the prostate gland. The surgery was scheduled in late summer.

A Second Opinion

Meanwhile, I attended a conference in Frankfurt, Germany in July 2019 as the Icelandic representative to Europa UOMO, the Prostate Cancer Organization of Europe, and decided to get a second opinion there. I contacted the University Hospital in Frankfurt and scheduled an appointment and biopsy.

The result was different than in Iceland. The doctor stated that the cancer had not spread beyond the gland but was close to the surface. I asked the doctor if I should accept his finding as the truth or the Icelandic one. He replied and said that he had taken about 3.000 biopsies and analyzed about 5.000 samples. I decided to trust his judgement. This emphasizes the importance of getting second opinions.

However, sampling showed that in one core, there was increasing cancer growth with a Gleason value of 8 (4 + 4) up from previous 7 (3+4) which had been my grade for 14 years. My urologists in Iceland now encouraged me to undergo radiation and Androgen Deprivation Therapy (ADT)therapy instead of radical surgery.

Now I was faced with a dilemma

Should I wait and see how the cancer developed? The tumor had not yet reached a dangerous stage. Would it grow and develop outside the gland? If I wanted to wait, I could expect to have more biopsies later.

I explored radiotherapy and found that my information on radiotherapy from fourteen years earlier was outdated. New technology has completely changed radiation treatment. It had become much more focused than previously. This points up an advantage of using Active Surveillance to defer treatment as the technology advances.

I also felt it was a different matter to go into treatment at the age of seventy-five than when I was initially diagnosed at the age of sixty-one with regards to the quality of life, and the consequences that could follow.

In August 2019 the PSA value had risen to 20.7. After I started ADT treatment the PSA was down to 0.85 in November 2019

Time For Treatment

I had thirty-nine radiation treatments, five times a week most weeks and two years of ADT every third month. I had little side effect during the radiation treatment, but I was tired when approaching the end. Walking daily to build up the strength and drank a lot of water.

My sex drive disappeared immediately. I asked the radiation doctor when I could expect the sex drive to return. His answer was I could expect a return two years after I had finished and recovered from the ADT treatment. I am in the process now having finished the ADT treatment in the spring of 2021.

There was another side effect but a positive one. My prostate shrunk. The size of my prostate gland before treatment was around 100 cc.  After the radiation therapy, the gland had shrunk in half to 50cc. Normal size in younger age is 20cc.  After the swelling from the radiation had disappeared, suddenly, I was able to urinate normally. What a relief!

My recent PSA measurements have shown a value of 0.04.

My cancer history spans 16 years. It has been instructive, meaningful, and educational. I am pleased that I made the choice to go on the AS journey as it preserved my robust quality of life and offered me much better treatment than I might have had fourteen years before going on AS. I am also grateful to be alive and given the opportunity to use my experience to support other men diagnosed with prostate cancer.

 

 

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