My dad is a 74-year old transgender woman who transitioned in 2014 but still has a prostate. At the point of transition in 2014 she continued to visit the doctor for regular yearly checkups, including bloodwork, but the doctor discontinued checking her PSA levels. She was not aware that her PSA levels were not being checked.
Three months ago she was diagnosed with stage IV metastatic prostate cancer, and the cancer is present in her prostate, sacrum, spine, lungs, and left shoulder. It may also be in her spleen and has lymph node involvement. Gleason score 7.
Here's how the diagnosis finally came about. Seven months ago (April), she began experiencing sciatica. The doctor referred her to a chiropractor, but did not investigate further. In fact the doctor refused to investigate further even after she pleaded for him to do so and stated that not only was the chiropractor not helping, the pain was getting worse. On August 1, the doctor agreed to schedule a CAT scan but didn't rush anything through and two weeks went by with the doctor saying, "they'll get it scheduled whenever they can," and then nothing. My uncle went to check on her in mid-August and found her almost completely unable to walk. It's important to mention that dad was living on her own 4.5 hours away from my uncle and I. My uncle demanded to see the primary care physician immediately, made sure the CAT scan was scheduled immediately, and scheduled an immediate appointment with a urologist. He and I then took turns staying with dad for the next few weeks while working through the appointments.
Bloodwork from the urologist came back with a PSA of 274. The CAT scan revealed significant evidence of cancer spread, and showed us why the sciatica was happening. A tumor was impacting her sciatic nerve. It was the urologist who realized that her PSA had not been checked since 2014. When questioned about this, her primary care doctor said that he thought it wasn't necessary to check because "you can't get prostate cancer if you're taking estrogen."
I fully admit to being angry with that doctor. If you have a patient who is biologically male with a prostate, and you know they have a prostate (this doctor knew my dad before she transitioned), why would you not check PSA levels? It's obviously clear that you CAN get prostate cancer while taking estrogen. Now dad is enduring severe pain, a grim prognosis, and upcoming rounds of what will probably be terribly difficult chemo treatments. She has already undergone radiation and begun hormone treatment. Her PSA levels have fallen from 274 to 25, which is fantastic, but the latest PET scan revealed the cancer is still spreading. From a personal perspective, she thought she had many years left. We thought we had many years with her. We hope that will still happen, but it's hard to be hopeful.
Here's the real kicker. It's not an aggressive form of prostate cancer. If her primary care doctor had checked her PSAs this would have been caught. Instead, they went unchecked for EIGHT years. Sometimes it feels like discrimination, although I suppose females don't have a prostate, so maybe it wasn't discriminatory. She still had a prostate, and that doctor knew it. It feels like negligence.
I'm hoping to hear from the transgender community about experiences with prostate cancer. Is it common for a doctor to stop checking PSA levels when a patient begins taking estrogen to transition from male to female (but does not have any surgical transitions)? Is this medical malpractice? Has anyone else experienced this?
One other thing - she recently re-located to be closer to me, her sisters, and her brother (we all live in the same metro area). She is transitioning into senior living and we are worried she may experience discrimination. Are there any senior transgender women on this forum who have had to navigate skilled nursing and senior living? Any advice would be so helpful. Thank you for reading this.