Prostate Cancer Survivor, Regrets

@nermalcantswim

I can sympathize with the side effects you have experienced. I had ADT (Lupron - 2 six month shots) starting in April of 2023. In June 2023 I had 28 radiation sessions. My PSA dropped from over 20 to <.03 and has stayed there ever since. The Lupron caused my testosterone to drop from a normal of 550 to <12 which has caused a bunch of issues.

I was told to expect hot flashes and some weakness along with lack of libido. I had all of that plus joint issues related to the muscle weakness. I have had to seek physical therapy twice in the last year for extreme knee pain. I also developed spinal issues affecting my arms and hands. I NEVER had any of these issues before Lupron.

Over the last six months I have developed neuropathy in both legs that "may" be due to the radiation affecting nerves in the pelvis. My testosterone has started a gradual recovery (56) a year after the last Lupron shot but I still have all the issues caused by lack of testosterone.

I was perfectly healthy and had no symptoms from the prostate cancer that was local. I am beginning to regret going through all the treatments because of the negative affect it has had on my quality of life. The cancer may have been there for a long time as I had high PSA readings since the late 1990's with 5 biopsies that found nothing. The last biopsy I had was transperineal and located a couple of 3+4 areas with a moderate decipher score.

Bottom line - I may have traded a "normal" quality of life for my age (77) for a lot of issues to treat a disease that may have stayed local for years. While the PSA staying undetectable is great, all the side effects are truly annoying.

@Oldernow

I'm also sorry for your experiences to date with prostate cancer (PCa). The best advice that I can give to you is to find a Medical Oncologist who specializes in PCa, and your best bet is to look in a cancer-related hospital setting, one with the best reputation in the area where you are willing to travel. A Medical Oncologist should be the leader of your PCa medical team, and they will call in other PCa specialists (Surgeons, Radiation Oncologists, etc.) as necessary to provide ongoing support and treatments for you.

There is no question that a diagnosis of PCa is devastating and a permanent life changer; however, there is still plenty of quality of life to be had as a PCa survivor. I truly believe that once you have established a patient relationship with a Medical Oncologist, you will see an overall improvement in your outlook on life. Also remember, your are not living in a vacuum, and your view of your outlook on life is observed and felt, and it directly impacts those around you.