Fourteen years ago I battled cancer. It’s back. This time it cannot be stopped.
In the autumn of 2005 I scheduled a routine physical exam. It had been a few years since my previous exam. I was 48.
At that time screening for prostate cancer started at age 50. My doctor said, “48, 50, close enough. Let’s do a PSA test so we can get a baseline to compare against in the years to come.”
PSA stands for Prostate-specific antigen. It “is a protein found in prostate cells that helps to keep semen liquefied. Most cases of prostate cancer develop in these cells, so an elevated PSA count may be a sign of prostate cancer.” Elevated PSA doesn’t necessarily mean cancer is present. But it does mean further investigation is warranted.
About a week after my exam my doctor’s office called, saying he’d like me to come in.
I got out my calendar and asked, “What day is good? Next week some time?”
The receptionist said “Oh no. He wants you to come in today.”
“Really? Why?” I asked.
“Your PSA is high,” she said.
“What is it?” I asked.
“Twenty two,” she said.
“What’s a normal?”
“Four or less.”
Thus began a roller coaster ride that recently took a steep turn.
It’s a roller coaster ride because once you’re on it you can’t get off until it ends. The test result is like the safety bar coming down across your lap and locking you in. From that point onward you’re just along for the ride, consisting of more tests, biopsies, treatments, still more tests, and so on. Even if initial treatment is successful, you can never really know if you’re cured. Lifelong diligence is required.
The good news is that prostate cancer progresses slowly. Most people who get it die with it rather than from it.
The steep turn is that it’s looking more and more like I’m not going to be one of those people.
My age at diagnosis – about ten or twenty years younger than that of most men – works against me. The cancer has had more time to do it’s nasty work. Add to that the fact that, probably not coincidentally, my instance of it seems more aggressive than most.
Nothing is imminent at this time. I have years left, not months. And new treatments are emerging all the time. So there’s always a chance that an off-ramp will become available.
And besides, not every case is the same. There’s also a chance that mine will be one of the stories that defies the odds.
But as of this moment, there’s no off-ramp, and the odds indicate that the number of years I have is in single digits.
Here’s how it’s played out so far.
After my initial test result, further investigation found cancer. I had surgery in April of 2006 to remove the prostate, followed a few months later by six weeks of daily radiation therapy because the post-surgical biopsy showed that the cancer had breached the outer wall of the prostate.
Every year thereafter I saw my urologist and got a PSA test. The result was always “undetectable.” If there was any PSA in my system it was below the levels the test can discern.
Fast-forward ten years to the week following my annual visit in 2016. I got a call from my urologist’s nurse-practitioner. She told me my PSA was 0.2. They ran the test twice to be sure. That number is the threshold at which they consider cancer to be recurring. I’d need to see another doctor.
There’s only one reason PSA will rise after the prostate has been removed. The new doctor, who I’m still seeing, is an oncologist.
The first thing he did was test my DNA.
Some gene mutations are associated with greater risks for certain types of cancer. A mutation in the BRCA gene, for example, is associated with a greater probability of breast cancer. Angelina Jolie tested positive and took bold preemptive action.
Gene therapy shows promise. A drug that’s been approved for the treatment of women “with deleterious or suspected deleterious germline of somatic BRCA-mutated” cancers may also be effective against some cancers in men who have the same mutations. That drug is Lynparza (Olaparib).
My diagnosis at such a young age suggested to my doctor that I might have a mutation. I was tested for 30 cancer-related mutations. One of them, NBN, came back positive. This made me eligible for a clinical trial to test the effectiveness of Olaparib in men.
Long story not too tedious, it didn’t work.
The presence of PSA in my blood indicates there’s cancer somewhere in my body. But at this point the cancer has not metastasized into a tumor that’s detectable.
So as of this moment there’s only one option; Hormone therapy.
Prostate cancer is fueled by testosterone. Hormone therapy stops the production of testosterone, and therefore the progression of the cancer.
For a while.
Eventually the cancer becomes resistant to the treatment and the rise in PSA becomes a juggernaut that can’t be stopped. At some point after that, maybe when the PSA climbs into the neighborhood of around 30 or so (your mileage may vary), metastasis occurs, typically in the form of bone cancer, and then we treat that.
But in the meantime the goal is to delay the inevitable as long as possible. This means a game of chicken with the cancer; just enough hormone therapy to slow its advance, but not so much that the disease becomes resistant too quickly.
The approach is called Intermittent Hormone Therapy. It works like this:
We wait until the PSA reaches a number somewhere between five and ten and then we begin the hormone therapy, consisting of an injection of a slow-dissolving medicine that works three months. Then another. This pushes PSA to zero or close to it.
Then we wait. We monitor PSA as it gradually rises, and we hit it again with another treatment after it climbs up to the neighborhood it was in when we hit it the first time.
Rinse and repeat.
Typically, the time between cycles reduces by about twenty percent each time as the disease develops resistance. After four or five cycles hormone treatment transitions from intermittent to regular and permanent.
The key word in the paragraph above is “typically.”
Apparently, I’m not typical.
The time between the start of my first and second cycles was a year.
But in my second cycle, my PSA never reached zero.
In fact, after the second injection, it went up.
Below is a graph showing how this has played out since 2016. After that is a message I sent to my doctor (forgive the typo) after my most recent PSA test, after that is his response. As of this writing, the Tuesday appointment mentioned in the messages is in the future, on 9/10/19.
To be continued…