Day 3,270 – Doctor Visit

Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.

The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.

He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.

One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.

I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”

We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.

On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.

It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?

Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)

The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.

That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.

Prostate cancer is not an “easy cancer.” Far from it.

12 thoughts on “Day 3,270 – Doctor Visit

  1. It’s remarkable, Dan, that you’ve researched this so thoroughly that you know more than your doc did about the various options. That’s the way to be a PC survivor. I’m sitting here taking notes! Thanks for sharing all your insight. It helps the rest of us with our own challenges. All the best, my friend.

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    1. Thanks, Jim. Given how vast the information is out there concerning prostate cancer, I know it’s difficult for all of us—doctors included—to keep up with what’s happening in the field. Even so, I have to admit (with a small sense of pride) when the doctor’s notes on our consult included: “He has done lots of research and comes with a plotted chart of his PSA values. ”

      Since the beginning of this, I’ve always maintained that patients need to be educated about and active in their own care and treatment decisions. It’s a partnership.

      Hope all is well with you.

      Dan

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  2. If you started charging for this circus act your in…kidding aside, PC has put you in a viscous cycle/balancing act. It’s easy to say to hang in there the next 4 months/keep busy, so…I want you to think what would Donna say….she surely would have some sarcastic, witty wisdom for you!

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  3. philblog100

    I am sure you are doing the right thing. I think it is best to avoid treatment (and the side effects) until all the information says it is time to act. Who knows what options may arise in the next year or two? Cheers, Phil

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    1. Hi Phil,

      Thanks for the comment and the insights. I’ve been trying to avoid those side effects for as long as I can, so I really appreciate the reinforcement. Still, I know there’s a point where I’m going to have to decide not to be silly about it all, and that point appears to be getting closer and closer.

      I hope you’re doing well.

      Best, Dan

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  4. Jack

    High my name is jack have been following you for a while we basically have the same pathology report. Psa at.0.14 went for radiation don’t want to take the chance

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    1. Thanks for your comment, Jack. How long ago did you have your radiation, and what side effects did you have, if any? Did it work on lowering your PSA?

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  5. Allan Odden

    Dan. I had prostate surgery in June 2018 [after a PSA of 7.75 and Gleasons of 7 (3+4) before surgery and 7 (4+3 after)]. Three months after surgery my PSA dropped to 0.10 but then rose to 0.12 and by December 31 had risen (and thus doubled) to 0.20 when my urologist said to see the radiation oncologist, which I did. I started hormone therapy in February 2019 and had 39 radiation treatments from mid-April 2018 to the end of June. And my PSA then dropped to zero. I am on hormone therapy for two years, ending in December of 2020. I am optimistic and while initially bummed that my PSA rose so much after surgery I am now glad I was able to quickly move to radiation to hopefully kill whatever bad guys had been left in my body. Allan O

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