In the spring of 2020 after being on TRT for 5 years, I stopped suddenly last year when I was diagnosed with prostate cancer with 9 of 12 biopsy cores were cancerous and Gleason score of 6. There was no abnormality detected in rectal exams. My PSA had gradually increased to 11 over a period of 12 years. I had no health insurance over half that time so did not see an urologist. I was scheduled for a prostatectomy but a radiation oncologist convinced me that external beam radiation would be better for me as it should kill all the cancer cells and have lower risk of ED. The treatment for cancer was delayed by the hospital due to the COVID-19 pandemic. In the meantime, I was diagnosed with an artery condition requiring heart-bypass surgery CABG in June 2020.
My PSA dropped to 2 after stopping the T injections but the radiation oncologist insisted that I should still get a shot to begin ADT. I received a shot of Lupron in 8/2020. A few weeks later, my T was 10. It was 980 and free T was 31 when I was under TRT. I had 28 days of radiation treatments in 11/2020. PSA was unmeasurable at that time.
In February 2021, the radiation oncologist wanted to give me another injection of Lupron but I refused. I had read several articles and the NCCN Guidelines for Prostate Cancer stating that ADT was not recommended for the level of cancer that I was diagnosed with. Since September 2020, I have had the following problems:
• I have lost muscle mass and gained 3 inches in waist fat. I was muscular before.
• Both RBC and WBC are now below 2. They were both at 5.5 before.
• I have terrible ED. Penis is noticeably smaller now and curved.
• Energy level is low. I get tired easily and have no stamina.
• I am 62 years old but feel like 80. Before, people thought I was in my late 40s.
• Libido is dreamed about but not experienced.
• I have terrible pain in all my fingers. No one seems to know why. The orthopedic hand surgeon said she has never heard of tendonitis suddenly striking all fingers at the same time. I have not been able to open a bottle of water or make a fist in over 6 months.
• My mind wanders. I have difficulty focusing. This has affected my work.
• Developed plantar fasciitis in my right foot that makes walking or standing very painful some days and tolerable other days. Never had any foot problems before.
• I have severe hot flashes that leave me exhausted and my shirt soaked. It is embarrassing when in public.
I walk at least 2 miles every day but cannot do any exercise that involves my hands.
18 months ago, I could do 50 sit-ups and 50 single-arm curls with a 45 lb. dumb-bell. Today, I struggle to do anything physical. A recent blood test shows my T is now 21 and PSA is still unmeasurable.
My urologist recently indicated that he is unwilling to put me on TRT again ever due to the prostate cancer. While he has no answers for all my symptoms now, he does not believe they are hormone related. I had none of these problems before stopping TRT. I have lost confidence in the urologist. This is depressing. I don’t know how to find a urologist or other doctor that has experience with someone like me.
My PSA dropped to 2 after stopping the T injections but the radiation oncologist insisted that I should still get a shot to begin ADT. I received a shot of Lupron in 8/2020. A few weeks later, my T was 10. It was 980 and free T was 31 when I was under TRT. I had 28 days of radiation treatments in 11/2020. PSA was unmeasurable at that time.
In February 2021, the radiation oncologist wanted to give me another injection of Lupron but I refused. I had read several articles and the NCCN Guidelines for Prostate Cancer stating that ADT was not recommended for the level of cancer that I was diagnosed with. Since September 2020, I have had the following problems:
• I have lost muscle mass and gained 3 inches in waist fat. I was muscular before.
• Both RBC and WBC are now below 2. They were both at 5.5 before.
• I have terrible ED. Penis is noticeably smaller now and curved.
• Energy level is low. I get tired easily and have no stamina.
• I am 62 years old but feel like 80. Before, people thought I was in my late 40s.
• Libido is dreamed about but not experienced.
• I have terrible pain in all my fingers. No one seems to know why. The orthopedic hand surgeon said she has never heard of tendonitis suddenly striking all fingers at the same time. I have not been able to open a bottle of water or make a fist in over 6 months.
• My mind wanders. I have difficulty focusing. This has affected my work.
• Developed plantar fasciitis in my right foot that makes walking or standing very painful some days and tolerable other days. Never had any foot problems before.
• I have severe hot flashes that leave me exhausted and my shirt soaked. It is embarrassing when in public.
I walk at least 2 miles every day but cannot do any exercise that involves my hands.
18 months ago, I could do 50 sit-ups and 50 single-arm curls with a 45 lb. dumb-bell. Today, I struggle to do anything physical. A recent blood test shows my T is now 21 and PSA is still unmeasurable.
My urologist recently indicated that he is unwilling to put me on TRT again ever due to the prostate cancer. While he has no answers for all my symptoms now, he does not believe they are hormone related. I had none of these problems before stopping TRT. I have lost confidence in the urologist. This is depressing. I don’t know how to find a urologist or other doctor that has experience with someone like me.