Options we don't consider

Back on August 20, I had a prostatic needle biopsy done by my urologist, Dr. Shapiro. The loml and I joke about his name being Shapeero. He's a good guy who tells it to you straight and has tons of experience. I get fairly lucky with doctors, and he's no exception. 

A prostatic needle biopsy is usually indicated by elevated prostate specific antigen (PSA) levels that persist after antibiotic treatment for possible prostatitis. A few other conditions lead to elevated PSA, such as benign prostate hyperplasy (BPH) and chronic non-bacterial prostatitis. There are also mysterious reasons why, for some men, PSA is just sometimes chronically elevated, even in the absence of symptoms. 

Anyway, my PSA levels have been very mildly elevated for at least a year, and 10 days followed by 30 days of Cipro didn't help. So Shapiro said to me, back in March, "Look, Peter, I know you don't want to hear this, but we need to do a biopsy. But we can also wait three months, get your PSA again, and see." He assured me my life was not at risk by waiting, so we took that cautious route. But, in June, the PSA level was still 4.4 (it's supposed to be a max of 3.5 for a man my age, but it's measured in nanograms per milliliter, so 4.4 isn't good but it's not awful. Sometimes PSA levels go above 10 or 12, and that is bad), so we went ahead and scheduled the biopsy, which couldn't be until August 20.

A prostatic needle biospy involves going in through the rectum with a 14 inch needle core tissue sampler, while the doctor watches an ultrasound, provided by a device called a trans-rectal ultrasound scope (TRUS). 

This device was sitting in plain view on a tray in the exam room. That may be unwise. 

Shapiro came into the room and said "Hey Percy, how you doin' today?" "I'm nervous, doc." "So am I!" he said, only half joking. I lay on my left side and he did a digital exam first, then got the TRUS in there. "I don't see anything of concern, so if anything is up, it's within your gland," he said. "Okay, now I am going to go in and deliver two numbing shots, on either side of the prostate. You'll feel a sharp pinch but the best news is, you'll hardly feel the rest of the procedure." "Okay, that sounds good to me."

The numbing shots were incredibly painful, which seems ironically funny to me. But he was right, for the rest of the procedure there was only a very slight discomfort, a sharp pinch with each firing of the needle. The biopsy itself consists of taking 12 tissue cores from several different regions of the prostate. It took a little while but I was glad he wasn't hurrying. However, I started to feel queasy, broke out into a cold sweat and got dizzy toward the end, probably just mentally psyching myself out, imagining what was happening in there. He could sense I was drifting a little and joked "Isn't this just the most fun you ever had? I have guys who come in to do this for recreational purposes." "I bet you charge extra for that doc." "Nope, in fact it's free, I figure anybody wants to do this deserves my pro bono services." 

Finally, he was done, and I took a few deep breaths. "You did great. Hardly any bleeding, which is always good. When you're ready, sit up and use one of these sterile pads to clean up the blood, put it in the biohazard bin, and the nurse and I will be back in a few minutes." I felt a tremendous sense of relief, as I had been anticipating this uncomfortable and somewhat invasive procedure for weeks, and it was finally over, and the worst part about it had been the numbing shots. Well, that and having to pay $380 out of pocket because of my deductible. 

About an hour after the procedure, however, the numbing shots wore off and the pain was excruciating. Due to the risk of increased bleeding, ibuprofen was not an option, so I had to take tylenol, which never really works for me. However, after about three hours, the pain finally started to subside. There were other side effects for a couple weeks regarding blood being present where one definitely would rather not have it be present, but I'll spare my readers those details. 

Thursday, I went in for the follow up. It's weird to wait two weeks for the result of a biopsy, but it's also good to know that the pathologist is taking their time. I was having waves of anxiety the whole morning, as well as in the waiting room. I was able to do brief meditations to calm that anxiety somewhat. Meditation is amazing. 

Then I waited in the exam room for a while. I could hear Shapiro in the next room, congratulating someone on being cancer free after treatment. "You're a champ, an anti-cancer hero. Do those pelvic floor exercises and let me know if you're having trouble getting an erection after about 60 days." I flashed back to all of the research I've been doing on prostate cancer and its treatment. Many factors go into making a decision after a positive biopsy. A man's age, the "grade" of the cancer using a measure called a Gleason score, the stage of the cancer (how extensive it is), PSA levels and more. Treatment ranges from conservative, which for men over 70 or so is called "watchful waiting," and for younger men, a slightly different protocol called "active surveillance." This involves keeping tabs on the cancer but not doing any other treatment. Treatment then ranges through a few other options all the way to radical prostatectomy, removal of the prostate (or, if necessary, removal of the lymph nodes and castration, I just loved reading about that). The best method for prostatectomy is robotic laparoscopic surgery using a thing called a Da Vinci robot. 

We live in the future

It's usually possible to spare the nerves that make erection possible, but sexual response never includes ejaculation again, since of course 98% of that is generated by the prostate. However, nearly 30% of men who get even the best surgery are completely sexually dysfunctional the rest of their lives. About 20% experience occasional incontinence and about 5% experience chronic and non-remediable incontinence and have to use pads and diapers the rest of their lives. So, as much progress as has been made in prostatectomy, it is still a daunting option. My anxiety was way up, thinking about all this, sitting in the clinical exam room. 

The idea of professionalism in medicine is okay, but it also leads to these frightening and cold, ugly rooms. I'm happy there were not inspirational posters from Bed Bath and Beyond, saying, maybe "Live, Laugh, Pee" however. 

Shapiro finally came in, asked how my recovery from the biopsy went, and then said "You have some prostate cancer." 

Okay. Huh.

He went on to explain, however, that the biopsy showed cancer in three of the cores, all adjacent, from the right side of the prostate. That the grade of the cancer is the lowest Gleason score, a six. That the stage is the earliest stage, T1C. That, with a PSA of 4.4, combined with those other measures, "for a guy with prostate cancer, this is the best possible scenario." 

In other words, he gave me the best possible bad news. 

This is not an option I had considered much. I had imagined either a negative biopsy or truly bad news that would indicate the need for a prostatectomy. I guess we tend to these extremes in our projections. All or nothing. I had imagined the enormous relief of a negative result (tempered by the ridiculously high false negative rate of 30% for this procedure), or my entire sexual identity and maybe even life changing drastically. 

The option I hadn't considered much was a positive biopsy but with the possibility that nothing would need to be done at this time. We talked at length about all of the treatment options. I asked him, "in your opinion, is it more likely I will die with this cancer rather than from it?" He replied, "You could say to me right now, fuck you Shapiro, you're full of shit, I don't believe you, get up and walk out and never see another urologist again and the strong likelihood is you'd die from something else 40 years from now." But he refused to make a recommendation flat out, yet, and gave me until September 27 to think about what I want to do. 

I am reading every study of active surveillance I can find, made much easier by having journal access through my ASU library account. My biopsy results fit the exact profile for a candidate for active surveillance. More aggressive treatment such as hormone therapy (which reduces testosterone to very low levels, because apparently prostate cancer "feeds" off testosterone), radiation or prostatectomy are all contraindicated by the biopsy. Sometimes, those treatments are actually not approved by insurance for a person with my profile. There was a trend in the '90's and early 2000's toward prostatectomy no matter what, but this is no longer the case. There are a few longitudinal studies with significant sample sizes showing men having what's called "indolent asymptomatic low grade" prostate cancer for 30 years or more. 

That's pretty good news. I'm leaning fairly heavily toward active surveillance now, but I'll keep researching between now and the 27th. The Ph.D. program has helped a lot in exploring this issue. I have been reading and analyzing peer reviewed research, rather than science reporting in the press. 

It's a strange thing to imagine, living with cancer for decades, knowing you have it, but not doing anything about it other than regular blood draws and rebiopsies at 2, 5 and 10 years. But it's better than the alternatives. The whole situation has brought home a lot of perspectives on mortality, sexuality, my identity, my sense of masculinity and my quality of life values. I'll be unpacking a lot of that over the next while, definitely. 

Yet another absolutely perfect series of events for a trip through Hades. This whole Pluto thing is supposed to be over on November 18th. So specific! Maybe I'll have a party on that date. Although I'd rather not tempt fate.