My PSA Results - 043

I recently returned from a vacation and back into the real world, knowing it was time for another prostate-specific antigen (PSA) level. As soon as I began thinking about having the test done, I started slipping into a low-grade sense of dread associated with the old "PSAnxiety." 

You'd think I'd be used to it by now, having experienced an elevated PSA for the past seven years. But you don't get used to it. You learn to cope.

I have noticed that the anxiety and dread are much lower grades than they used to be, and I'm thankful for that. 

I was due for a physical with my primary care physician, so I scheduled that and had him order my PSA test. It only took a day and a half to receive a message that the result was in my online portal. I signed in and checked it while at work but waited until I was about to leave. 

I have to admit that my heart was pounding when I signed in. I had high expectations for a good result, meaning it hadn't doubled since the last check. I was hoping that it had stabilized or even dropped a bit as it had once before. But, no such luck.

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There it was, blaring off the page at me - 197. 

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Okay, it's not terrible, but it's not good either. My last PSA was 135 on December 6, 2023. On August 21, 2023, my PSA was 117. The PSA doubling time since August is 11.2 months and since December, 9.2 months. 

The medical literature points to a cut-off in doubling time of around ten months when the risk increases. But in all honesty, my risk for metastases is already sky-high with a PSA of 197, regardless of the doubling time. People keep asking me how I could have had two normal positron emission tomography (PET) contrasted tomography (CT) scans since last May with such high PSA levels. 

Their eyes gloss over when I try to explain how the cancer is no longer expressing prostate-specific membrane antigens. But that still doesn't explain how I have otherwise normal labs and no evidence of masses, bone lesions, or enlarged lymph nodes on my scans.   

Some will say I'm just lucky and that, eventually, time will run out. Doesn't time run out for everybody eventually?

In the meantime, I'm living and enjoying life, hoping I'll figure out the key to a miraculous cure. I know it's out there. Many people have gone into spontaneous remission, but are those cases genuinely spontaneous? 

I haven't been hanging out eating french fries and ice cream, hoping I spontaneously remit. As you know from my experiences detailed in prior newsletters, I've been working hard at this and being consistent.    

The day after I got my PSA results, a health insurance company representative called me asking if I'd hold the line to speak with one of their nurse case managers. The call woke me from a nap, and I groggily agreed to hold. After a minute and a half on hold, I hung up.

I've been down that road with a health insurance case manager previously. It was around the time I was having catastrophic side effects from androgen deprivation therapy. Health insurance companies sometimes assign case managers to high-risk patients to save the company money. 

They want to make sure the patient is doing what they are supposed to be doing. You know, following the guidelines. 

I have followed the guidelines. I underwent a radical prostatectomy, started androgen deprivation therapy, and then underwent radiation therapy to my pelvis. 

I continued to follow up with my radiation oncologist until he deemed I was a candidate for proton therapy, and then I did that. I've had two PET scans in the past year since proton therapy, showing no evidence of metastatic disease. 

I have a feeling what triggered the red flag for my insurance company is seeing a PSA of 197 and noticing I'm not taking androgen deprivation therapy of any type. That's my assumption, anyway. 

The last time I was assigned a health insurance case manager, it lasted for about nine months. Initially, our conversations consisted of telling her what I knew she could see in my chart. Toward the end of our relationship, we talked about our families, the weather, and upcoming vacations.

And then I switched insurance. It was a total waste of time. I can see how having a case manager helps people, but it won't help me. 

I'm not going on androgen deprivation therapy because my insurance company assigned me a case manager. Anyway, I let the phone ring when they tried to call me back the next day. Surprisingly, they didn't leave a voice mail. 

Do I sound a little drab? I don't feel depressed, just very disappointed. My mind frequently wanders to, "What should I do now?" Hyperbaric oxygen therapy? A strict keto diet? High-dose enzymes? Go back on mistletoe? Another round of fenbendazole or ivermectin? All of the above?

I've done all those things in various combinations except the hyperbaric oxygen. I'm considering it after I found out the clinic that gave me ozone therapy offers it for 90 minutes for $250 a shot. 

I'd either have to dehydrate myself for each session or take a urinal in with me. LOL! There's zero privacy in those glass boxes. Ever since I had the prostatectomy and radiation to my pelvis, I have had to urinate pretty frequently.  

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This rollercoaster ride has been going on for almost seven years. I want to walk on solid ground again. 

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In the meantime, I've emailed my PSA results to my radiation oncologist and await a response. I'm almost 100% sure he will want to do an Axumin PET scan. And then what? More whack-a-mole with the radiation?

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I do know one thing - I’m not giving up!

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There’s one thing I always fall back on in times like these: faith. Deep down, I know I can achieve my goal. With a little help:-)

Anyway, thanks for letting me vent. This newsletter is my form of journaling and is therapeutic for me. I already feel better. 

Until the next one, stay well. 

Much love,

Keith