I had been getting my PSA (Prostate Specific Antigen) tested for a few years along with a DRE (digital rectal examine). In 2008 my family doctor noticed a rise in the PSA along with hardness to my prostate gland and at 53 years old I was referred to a Urologist who recommended that a biopsy be done.
The biopsy confirmed I had Pca (Prostate Cancer). My Gleason score was 7 (3+4) and within 3 months my PSA had risen from 4.47 to 5.7. Because of the velocity and my age I was not considered a good candidate for external beam radiation or brachytherapy, so I had a radical prostatectomy. The surgery went well, and pathology indicated my margins were clear. It was felt my cancer was contained in the gland which had been removed. But unfortunately, within in 6 months my PSA had started to rise. Less than a year after surgery I was referred to a radio-oncologist and my PSA had risen back up to 2.0.
Radiation of the pelvic area was not available to me because of my age and my recurrence was felt to be microscopic, meaning they would have to radiate my entire pelvic region with no assurance they would be radiating the cancer. I was referred to a medical oncologist who enrolled me into a clinical trial involving a relatively new chemotherapy, at the time, (Taxotere / Docetaxel) combined with ADT (Androgen Depravation Therapy). 6 months of chemotherapy along with 18 months of ADT. My PSA dropped immediately but within 6 months of finishing the ADT the PSA began a slow rise. When I say slow rise, I mean slow. It took less than 4 years to go from 0.2 to 13.8.
Until then regular bone and CT scans did not reveal any metastasis but a scan in November 2016 revealed a 2 cm tumor in the prostate bed. After a referral to the tumor board, it was decided that I would immediately restart ADT in an attempt to shrink the tumor to allow for radiation and minimize potential damage to vital organs. The plan worked and in June 2017 I completed 20 rounds of radiation. My PSA was again undetectable, and scans showed no evidence of the tumor.
In January 2018 my PSA was still undetectable and we decided I could take a treatment holiday. Unfortunately, within 6 months, my PSA was rising again and within the year I was back on ADT. This time my PSA did not drop to undetectable but hovered around 2 until March 2020 when it rose to 3. By September my PSA doubling time had gone from over 14 months to 6 months.
Fortunately, I again was able to enroll in a study involving a new drug which had just been approved by Health Canada in February that year. Since starting Darolutamide in October 2020 my PSA has remained undetectable.
I am one of the luckier men who has minimal side effects. My spouse attends all my doctor appointments and keeps me on track. I have a supportive family and a well-informed support network of friends whom I met in PROSTAID Calgary.
3 Key take aways?
1) Be your own best advocate. Do your research. Be prepared to have informed discussions with your medical team.
2) Do not discount the importance and value of clinical trials and studies. They can change the course of standards of care for those who might be on a similar journey.
3) Rely on the support of family, friends, and support groups. Thet are invaluable. This is a marathon, and you cannot do it alone. Also, you won’t believe, the huge benefit to you when you help others.