Dad’s Prostate Cancer Journey: Next Steps

My family received some news that was tough to hear, news that we had all been quietly dreading: Dad’s prostate cancer was back. Technically, it probably never left, despite our hope that after his prostatectomy surgeryfour years ago and two rounds of radiation that we were done with this stressful, scary nightmare. But apparently not. My heart dropped as soon as my mom told me the news and fear flooded throughout me. Panic. Tears filled my eyes. No, no, no! It’s not fair.

What the PET scans revealed

How did Dad go from completing treatment with only intermittent PSA checks to being told that the cancer had most likely spread? Well, it was a much higher PSA reading that caused concern for his doctors and prompted a PET scan. His PSA level had doubled since the last time it was checked, which wasn’t good. I remember having a sick, nervous feeling in my stomach when my mother told me that he needed to have the scan done. In my mind, PET scans usually didn’t bring good news. I prayed that nothing would show up on Dad’s.

Something did show up on the PET scan, however: two spots. An area in a lymph node lit up with an undeniable brightness, convincing the doctors that it was metastasized prostate cancer cells. The other spot was there, but didn't light up in the same way as the other one had. This suspicious area on the scan was located in one of Dad's back bones. Even though PET scans can't say for sure that abnormal spots are cancer, Dad's results followed prostate cancer's nasty, sneaky pattern of spreading: to the lymph nodes and bones. Plus, his PSA had doubled, which was abnormal.

Supporting Dad in his follow-up appointment

After waiting for what felt like an excruciatingly long month, Dad had his follow-up appointment with a new oncologist to go over the PET scan and treatment options. My mom, sister, and I all went with him. I wanted to be there and hear the information myself and I had my own questions that I felt I needed to ask the doctor. Thankfully Dad didn't mind us going and crashing his appointment. I kind of felt like maybe his doctor minded a bit, though, which I found frustrating and irritating.

Living with a serious autoimmune disease myself for the last 21 years has turned me into a sort of "pro patient," perhaps. I've been forced to stumble my way through the often complicated and confusing U.S. healthcare system and I've learned a lot by doing this.

Advocating for my father

Dad hasn't had to deal with many health problems during most of his 72 years, which is very fortunate. But this also makes me worry that he might not be assertive enough when it comes to taking care of his health. Advocating for myself as a patient is a skill that I've come to learn mostly due to bad experiences with doctors and clinics and all sorts of other things. So if I can help my father receive the best care possible, in any way, I will do it.

Read the continuation of "Dad’s Prostate Cancer Journey: Next Steps" in Part II here.

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