I want to give a clear, concise, and somewhat organized update about how and when my cancer journey began, what has happened since my diagnosis, and what the plan moving forward looks like. My nursing colleagues and friends will appreciate (and maybe be a little bit triggered by) the format of this post. Sorry, not sorry.
Situation
I recently completed 28 doses of photon radiation at Fred Hutch Cancer Center/UW Medical Center in Seattle, WA as part of my treatment for advanced metastatic prostate cancer. Treatments were daily, Monday through Friday, beginning on November 13, 2024 and ending on December 20, 2024. Side effects I experienced from the radiation were minimal. Urinary retention and discomfort while urinating have been moderately well managed with Flomax and ibuprofen. Minor constipation has resolved with daily OTC laxatives. Fatigue has also been minimal with less than ten days over the past two months that I felt any fatigue was even noticeable.
Background
I was diagnosed with advanced metastatic prostate cancer on April 10, 2024. I went to see my doctor on April 1 for urinary urgency, frequency, and decreased output. Suspecting possible prostatitis (a low-grade infection/inflammation of the prostate), he ordered blood tests to check for an elevated PSA (prostate specific antigen). The normal range for PSA is 0-4. My PSA was 44. I was prescribed antibiotics to treat any potential infection and referred to a urologist. I was able to get in to see the urologist on April 5, who recommended a biopsy based on my notably firm and enlarged prostate. The biopsy was performed on April 8 and the results returned on April 10. The results of the biopsy showed cancer present in all (13) samples, with Gleason scores ranging from 7 to 9. Typical Gleason scores range from 6-10, with 10 being the most aggressive. Based on this, I was given a Grade Group of 5. The five Grade Groups, which are based on Gleason grades, correlate with the aggressiveness of the cancer. The range is from 1 (least aggressive) to 5 (most aggressive). Additional testing was done, including CT scan, bone density scan, PET scan, and MRI. Notably, the PET scan revealed metastasis to several chains of lymph nodes in my pelvis, but no distant metastases. This meant that the cancer was classified as Stage III. Stage IV would mean that the cancer has spread outside of the original site to other organs or distant areas of your body. Luckily, this was not the case for me.
The first component of treatment was medication. I began taking prednisone as well as two hormone medications, Orgovyx (relugolix) on May 15 and Zytiga (abiraterone) beginning the following week to suppress testosterone production, since testosterone is what feeds prostate cancer. On that day, my PSA was 61. Due to the lymph node involvement, surgery was not recommended as part of my treatment since I would be exposed to all the risks and side effects of the surgery and still have cancer.
I flew to Seattle and met with the interdisciplinary oncology team at Fred Hutch Cancer Center on May 23 to get a second opinion on treatment options and prognosis. They agreed that surgery was not advised and that medication and radiation would be my best course of action. I felt that Fred Hutch would be the best option for me, so planned to begin radiation treatment there in about 5-6 months to allow the medication time to shrink the tumor as much as possible.
On June 6, my first PSA check following starting the medications showed excellent progress with a PSA of 2.64. Subsequent blood work has been encouraging, with my most recent PSA being 0.03 on October 23, just before radiation started.
Additionally, I had genetic testing done, since it seemed that there was a significant family history of prostate cancer, though I was by far the youngest person in the family to be diagnosed. That testing showed a positive CHEK-2 mutation, which increases risk for prostate, breast, and colorectal cancer. Having that knowledge is useful because I can make sure my kids are aware of it and subsequently, they can get genetic testing done to determine whether they also have the same hereditary mutation.
Assessment
The radiation oncologist I am working with at Fred Hutch/UW Medical Center was extremely pleased with how the radiation treatment went and how well I tolerated the treatment overall. I will have my next PSA check on January 8, 2025. The expectation is that my PSA at that point should be undetectable. Most importantly, I’m home and feeling great, and have an amazing support network.
Recommendation
Moving forward, I will continue the hormone medications and prednisone for roughly 18-24 months. At that point, my treatment will effectively be complete. I will continue getting bloodwork done every three months, I assume for life, to monitor PSA levels, general metabolic function, and blood counts. Aside from initially elevated PSA, everything else has been normal to date. When I stop taking the medications, my PSA is expected to increase slightly as my body establishes a new baseline. As long as my PSA stays under 1.0, the doctors won’t be concerned. If, at some point, my PSA levels do begin to rise above 1.0, that will likely be mean that the cancer has returned and we’ll address it at that point.
Flight of the Raven 