Hi folks,
thought I would share my journey over the last one and a half years since diagnosis of prostrate cancer.
Prostrate cancer was my third cancer diagnosis in just over two years so have a "Hat Trick", the first two found at the same time was thymus and renal Cancer, both of these were treated with surgery only in 2022.
My father had prostrate cancer so I started having PSA test done from age of 50, over the years it gradually rose and by the age of 63 was 3.99 so at the normal upper limit. I spoke with my doctor and he did a rectal examination and found nothing of concern but suggested ultrasound test due to my father. Feb 2023 had ultrasound done and nothing to report, and I had no symptoms for enlarged or prostrate cancer.
In July 2023 I had a appointment with my urologist after my 6 monthly CT scan for the first two cancers, plus he had asked for a PSA test. The scan was all fine and I was really up beat until he informed me my PSA was now 6.7. He did a rectal exam but again no issue noted. However to be sure he suggested MRI.
August 2023 had MRI scan which came back with lesion on left side of prostrate p-rads 4 about 1cm in lower rear Pz zone. Biopsy done September 2023 came back 3/3, so AS suggested but here in France second biopsy is done three months later. December 2023 second biopsy done and I was not prepared for result I had now gone from a 3/3 to 3/5 plus Cribriform. January 2024 had PMSA scan, cancer only show in prostrate but Lux 12.5 so highly active. DNA testing showed no genetic issues.
My urologist offered either RP or EBRT. I chose EBRT as the thymus cancer has left me with myasthenia gravis which makes general anaesthetic risky and I have to have IV IG about a week before surgery which always make me sick as a dog.
April 2024 start 40 sessions of radiation plus one month before radiation start hormone treatment. The radiation treatment went well some side effects such as difficult to urinate and an amazing sun tan on my arse, no bowel issues to speak of and no fatigue drove 80 miles round trip each day for treatment.
Hormone treatment has been another story! I started off with Prostap injection ever 3 months however several days after injection had a mild myasthenia reaction so oncologist suggested taking Orgovyx tablet once three months up on first Prostap injection, started Orgovyx September 2024.
The prostap gave me very mild hot flashes and one month after the end of my EBRT my PSA was <.03 from 6.7 pre treatment so really good. Now comes the Orgovyx, within a month of taking hot flashes went to extreme around 15/20 per 24 hours including 4/5 during the night and sweating on a grand scale. By six months was also having bone pain plus joint pain and memory issues plus fatigue and only get several hours of sleep per night, some weight gain but I am slight build so not an issue. The oncologist wanted me to stay on hormone treatment for 18 months due to 3/5 score etc. However I have stopped the hormone treatment at 10 months as my quality of life was becoming so poor. At 4 and 7 months post EBRT my PSA has remained at <.03.
So who knows what the future holds, I have chosen quality of life over maybe longevity but then with two other cancers in the mix who knows where they may go. I think the main point of my story so far is that it can be so easy to miss prostrate cancer, I had no symptoms and for some time even early tests did not flag up any issue. I remain positive and just carry on enjoying life. At the end of the day you can only take decisions on the facts in front of you so no point ever worrying if you made the right one, just enjoy the ride!