Updated: Feb 16
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Probably, at first, this seems like a weird way to share my journey, as opposed to individual conversations, but the truth is, I don’t really feel much like talking about it over and over. Sometimes I want help figuring something out, but most of the time with my loved ones, I'd rather go for a walk, play a game, prepare and enjoy a meal, watch a movie, or something else. And to be perfectly honest, it's hard enough for me to process my own feelings without having to also accommodate the reactions of whomever I am talking to.
I hope this allows me to choose where and when I want to have those conversations and gives information to those who want to know. I'm also interested in reducing the stigma of talking about prostate cancer. Because of the nature of it, it feels exposing to discuss, but it's a necessity, and the difficulty of discussing it delays diagnosis and treatment, which can be life changing or even fatal.
I am also doing this because although I'm hoping, with some justification, that this isn’t an epic journey, I want to document the beginnings for my own reflections later.
Nobody is obligated in any way to read this. People have other things in their lives – relationships, work, travel, their own health, children – and I accept that people care about me without their having to read a dissertation on my experience.
Lots of things in life are ordinary until they happen to you or your loved one. When a woman is in the middle of giving birth, nothing about that is mundane, regardless of how many other women have gone through it. About 13 percent of men get prostate cancer at some time in their lives, usually first diagnosis happening after age 65 (at the time of this writing, I'm 63). While the five-year survival rate with prostate cancer is very high — 90 percent, according to the ACS — it's still the second leading cause of cancer death in men. But then, that's just five years.... Being in it feels anything but mundane.
My Dad had prostate cancer. His doctor started monitoring his PSA (Prostate Specific Antigen) routinely when Dad was about 50, and Dad became concerned when his numbers crept up out of the normal range (below 3). His doctor encouraged him not to worry, saying correctly that on its own, PSA is not a very reliable marker or predictor for cancer, especially small variances. But as the numbers climbed, Dad insisted on a referral to a urologist, who performed a biopsy, and found that there was actual cancer present. Dad doesn’t remember much about the particulars about the numbers or the findings from the biopsy, but he elected to quickly get a radical prostatectomy.
More about Dad later. Dad is 97, living fairly well on his own, with nothing much wrong with him.
Because of Dad’s trouble, I started monitoring my PSA levels around 20 years ago when I was in my early forties, and of course had the standard digital rectal exams as part of my annual physical. When my PSA numbers started to rise, my doctors encouraged being temperate in response – in fact, they criticized (rightly) PSA tests as they often precipitate unnecessary biopsies, which have some risk associated, and are unpleasant side effects.
About ten years ago, as my PSA levels were rising, my primary care doc referred me to a urologist I liked the guy – he was personable and gave off an air of competence, and also was very respectful. He suggested a biopsy, and explained the risks and benefits, as well as known side effects – mostly pain, infection risk, a period of bloody urination and ejaculation. He explained that it would be a outpatient procedure in which he would put a fairly large instrument into my rectum, which would shoot, and then retrieve narrow capillary tubes into my prostate, extracting “cores” of tissue which would be evaluated for amount and type of cancerous cells, should any exist. He said that I would be able to drive myself home afterward, prescribed antibiotics to mitigate infection risk, instructed me to take an enema a short time before the procedure. He also said the choice to do the biopsy was entirely mine, but that the associatedrisk reduction, in his mind was worth the discomfort.
I agreed to follow his expert advice, and we scheduled the appointment. As planned, I drove myself to his office, and he and the staff were brisk and professional, checking my vitals, having me disrobe and don an hospital gown (open in back). I was placed in what could best be called a “vulnerable” position on an operating table, and the doctor explained that he would start by injecting a bit of novocaine into my prostate to reduce discomfort. Like at the dentist, the novocaine injection was quite uncomfortable, and in addition to the pain in my prostate, felt like i was leaking from the penis, though I don’t know whether I actually was or not.
The doctor asked the nurse for the cartridge which contained 12 tubes for sampling, and explained that he was inserting the cartridge into the device which seemed to me kind of like one of those plastic kids’ dart guns. As far as I could tell, he was aiming at various parts of the prostate, and pulling the trigger, each time sending a spring loaded tube into the prostate, then handing it back to the nurse with some instructions for labeling so they could tell from what parts of the prostate each one came. Because my prostate is large, they took an extra four cores.
A couple tips if you're having this done: Ask for an ativan (or similar) to take before the procedure. There is nothing to be gained, as far as I can see, from being in your natural consciousness for the experience. Ask the doctor to give a couple minutes for the novocaine to take effect before starting the biopsies. Finally, my doctor was giving me a countdown ("only 9 left.....now 8,.... now 7," etc). This made it worse not better for me, but your results may vary.
A few days later, I went back to the urologist’s office, accompanied by my brother to get the results. I was expecting a basic non-result since the prior debriefs had been so casual and not at all alarming. After we’ been seated in the office for a few minutes, the doctor came in smiling and said, “Well I do have some good news.” To me, that meant, “Oh good, no cancer.”
Then he continued, “The good news is that you’ve got lots of options. We’ve caught it early, and there are numerous choices I’ll tell you about now.” The temperature in the room seemed to have dropped about 20 degrees, but I was on high alert, hanging on each word. In short, there were a couple radiation approaches, radical prostatectomy, and active surveillance. He explained that a certain number of people, when they learn they have any kind of cancer simply want to immediately take the most aggressive steps to remove it, but that active surveillance was a very reasonable and prudent option. The idea in active surveillance is that you stay on a regular schedule of blood tests, imaging, digital exams, and biopsies, which include genetic testing of the sampled material to determine level of aggressiveness. It’s well-recognized and there are FDA protocols.
Some people can be on active surveillance for many years, often dying from some other cause long before prostate cancer becomes a problem. The risk, is that in some cases, the cancer metastasizes. Metastatic prostate cancer is an ugly way to go
Based on my profile (I may go back and fill in more specifics later), I was told that it was not unlikely that I’d have to choose some intervention at some future point, as I was (am) fairly young and healthy, but that could be a long, long time, and that it’s possible that new technologies might become available during the waiting period.
Fast forward to today:
My PSA has spiked to a level of higher concern, and I had a new biopsy which suggests that my cancer has become more aggressive. My urologist has recommended radical prostatectomy, but adds that the decision is mine, and that he will support whatever I want to do.
My own research has uncovered some alternatives including Partial Gland Ablation (PGA) where they essentially go after the tumors with either electrical impulse (this is called Nanoknife and is generally thought to be the best of the PGA tools), cryotherapy, or heat. It was unclear whether my HMO would pay for PGA, but my urologist referred me to another surgeon within the HMO who does this surgery, but with the caveat that I am probably not a good candidate because the cancerous lesions are not visible in the MRI Imaging done to date, and the PGA intervention is guided by locating the lesions on the imaging, and also that I shouldn’t delay too long.
The surgeon I was referred to explained that he uses the Nano knife, and said he believed that he could use it to ablate the majority of the perimeter on one side, likely destroying all the cancerous tissue, even if we couldn’t locate the specific tumor sites.
Meanwhile, wanting the best possible counsel, I sought two second opinions from experts at Stanford. I will say that getting this approved took many hours spread out over a couple weeks each time dealing with an impenetrable bureaucracy at Blue Shield of California. One of the experts was unhelpful because as an oncologist – not a surgeon, he couldn’t comment helpfully on the relative merits of the two different surgeries. The other expert echoed my first urologist’s concern about being able to find the lesions if they aren’t visible in MRI.
The PGA/Nanoknife surgeon, upon hearing this, re-emphasized that he believes it can work, and that he’s in a good position to judge because he actually does the surgeries and works with the tools himself. (makes sense) He ordered a PET Scan (different type of imaging) and follow up PSA test. Hopefully this provides some clarification because I am running out of time to make a decision and implement it. Or at least, the risk increases with time.
I will post further updates after the PET scan and PSA results are available. I’ll drive myself over to Santa Cruz tomorrow to get the scan facility, and go to the lab, and I’ll take the dog and have a walk on the beach before and after.
I feel somewhere between worried and at peace. The worry occurs mostly between 3 and 5 AM interrupting my sleep. When I have time to think about it in daylight, I’m grateful to have the support of my loved ones, and the resources that are at my disposal. I’m glad I’m here, where I speak the language, and have some concept of how things are done. I know I will go through some unpleasantness, and will likely end up some version of okay, though erectile dysfunction, incontinence, and other indignities are often part of the picture, yet probably, life will go on. And it’s a disorienting moment in life of realizing there’s a lot more behind than ahead, and that puts all of this in a different perspective.