Tag Archives: prostate cancer

Saga Redux Part 2

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The CT simulation takes anywhere from twenty minutes to an hour. The patient lays on the table and the body area being treated is immobilized with either a mask (for head and neck) or a Vac-LokTM cushion filled with Styrofoam beads. When air is removed from the cushion, it creates a unique mold, so that the patient is in the same position for each treatment. The tech also marks the target area with tattoos, guided by laser beams across my abdomen.

They gave me these instructions to follow before my simulation appointment:

I’m not sure how many people are able to empty their bowels and bladder on command. Everyone’s physiology is unique, so generic instructions like this should be taken as suggestions, not dogma. I used a disposable enema in preparation for the simulation and drank water as ordered. CT appointments were running late, and I had to cross my legs by the time the tech called me.

“Is your bladder full?”
“It’s more than full. My teeth are floating.”
“Well, you’re going to have to hold it for at least 20 minutes. Do you think you can do that?”
“Oh, hell no!”
“Well, empty your bladder a little bit but not too much.”
That’s easy for you to say…

The CT simulator room was down a long hallway past steel double doors and far from the treatment rooms. The tech placed what looked like a heavy, vinyl sleeping bag on the bottom half of the simulator table before I lay down. A few minutes later I felt the Vac-LokTM bag harden around my legs. The tech left the room after all was set, and all I had to do was lie back and think of England for the next 20 minutes.

When the scan was finished, she made three cross marks with an ink pen – one in the middle of my lower abdomen and one near each hip – and covered them with waterproof tape. I’d get permanent tattoos at my first treatment. Before I got off the table, she took my picture with a small digital camera. My DMV mugshot looks like a Rembrandt portrait in comparison.

A radiation physicist and/or medical dosimetrist uses the information acquired by the scan to calculate radiation doses, precise target locations and the number of daily treatments required. This can take a few days or a couple of weeks. (I also think they use the time to ensure treatment is covered.) Treatment starts after the radiation oncologist approves the plan.

I got the call on January 24 to start treatment the following Monday.

The Radiation Oncology treatment center runs about 80 patients through two rooms every day. New patients are fitted into available slots for the first week or two; they get a regular appointment time as other patients complete their treatments and leave. My appointments were anywhere from 1:15pm to 4:15pm before getting a 12:30 slot at the end of week 2. This was a great time because there were more available parking spots near the entrance.

On Monday I arrived 15 minutes before my appointment only to find my first treatment session was cancelled because of some issue with the machine. Carla explained someone had called me, but I didn’t recognize the number and had ignored it. (Note to self: add important number to your contacts.) She assured me their technical people were working on it and I should be able to start the following day.

Peg had gone into work, so she called to ask for an update.

“So how did your first session go?”
“It didn’t. The machine was broken.”
“What happened?”
“Well, it got stuck and the guy who was in there got a massive radiation dose and he exploded all over the place. There are guts on the wall, and they had to bring in a hazmat team to clean it up.”
“WHAT? Oh my God!  That poor man! I can see where they’d need hazmat with all that radiation…Wait, did that really happen?”
Me snickering on the other end.
“You’re an asshole.”

On Tuesday Radiation Oncology called me just as I was getting ready to leave.

“We’re still having problems with the machine, and they are waiting for a part.”
“What, STILL??? So, I’m going to have to wait another day?”
“No, we are trying to work people in. Can you come for a treatment at 4:15 today?”
“Yeah, that will work.”
Not as if I have a choice.

Peg was livid when I told her.

“It’s not a problem for you; you’re retired, and it’s only a 15-minute drive for you. What if it was someone who was working and had to arrange time off? Or someone who had to drive 30 or 40 miles to get to their treatment? If we have a problem with our computer system, someone is on it right away! If this is going to be a regular occurrence, we might have to think about going to one of their other facilities that is more reliable for your treatment!”

Carla took me back to the treatment area for the first time and showed me the locker room. After that, I was allowed to pass GO and head back on my own. There were separate locker and waiting rooms for men and women, not unexpected since most patients wore hospital gowns to expose their treatment areas.

The flat-panel TV on the wall drowned out the overhead speaker playing classic pop music from the 1960s to the 1980s, appropriate for our ages. There was a rotating collection of old guys in the waiting room during my first week; we recognized our arrivals with nods or grunts while watching Bonanza and Rifleman reruns. Several times one man sat in the corner reading a book. I assumed he was there supporting his wife since no one ever called him back for treatment.

Mostly we kept to ourselves, but one day an older man started talking to me about his disease. I wasn’t sure what to say so I just listened.

“I had prostate cancer and now it’s in my bones. They did this procedure (therapeutic plasma exchange) where they take your blood out and clean it and put it back in and that’s helped a lot with the pain.”

He seemed far less upset than I might have been, but maybe that’s part of getting older. You’re resigned to the things you can’t really change and just hope the eventual end isn’t terribly painful.

I couldn’t have any metal (rivets, buttons, zippers) near the treatment zone, so in the beginning I changed out of my jeans and put on a hospital gown. By the third week I’d learned to wear sweatpants and slip-on shoes after seeing another guy wearing them. One might figure they’d make that suggestion to patients, but one would be mistaken.) I’d toss my jacket, car keys and shoes into the locker and was ready to go.

I played around with the amount of water and the time when I started to drink. I learned not to eat a Reuben just before drinking because the fat slowed down water absorption. I tried drinking a lot more than usual to get my bladder to fill, but I paid the price when I peed like a racehorse for a couple of hours, long after my treatment ended.  

I started wearing Depends because it was difficult to fill my bladder enough to keep the techs happy but not so full that I might leak. One time the tech, a young guy probably in his 20s, told me my bladder wasn’t full enough and I should drink more water before the next treatment. (That’s easy for you to say.)  I’d gotten the sudden onset of explosive diarrhea right before my session and unless I clamped the hose with a chip clip, my bladder was going to be on the dry side.

My routine: Every day the techs call my name and escort me to a long desk on which sat several computer screens. Each time they ask for my name and date of birth, which I think is a bit silly. They know my name, my picture is on the computer screen, and I can’t imagine why anyone would sneak into radiation treatments for the hell of it.

There are three large signs above the entrance – HDR, BEAM and XRAY – which illuminate depending on which process is active. The department uses high dose radioisotopes (HDR) such as iodine-131 (I-131) for treating thyroid cancer. I’m getting Intensity-Modulated Radiation Therapy (IMRT) which uses higher doses of x-rays (BEAM). XRAY lights up when doing a CT scan, a much lower dose, before treatment.

I walk in past a 10” thick door filled with lead and into a lead lined treatment room.  When I told Peg about the lead, she said, “See! The chances of a disaster are low but not zero!”

The star of the show is the Varian TrueBeamTM Linear Accelerator. The kV x-ray generator and flat panel detector are at 3 and 9 o’clock. The Electronic Portal Imaging Device (EPID) is at 12 o’clock. The linear accelerator treatment head is at 6 o’clock.

I drop my pants and jump on the table, putting my legs in the Vac-Lok mold. They ask if I want a blanket, but I decline because it’s warm in the room. They are quick to cover my nether regions with a pillowcase, but I think it’s for their peace of mind more than mine. Old man penis, like its owner, is tired and not much to look at. Laying on my back is uncomfortable. I’m trying to keep my bladder from leaking, and my right shoulder hurts when I put my arms above my head. I just want to get it over with.

They raise the table and push it towards the machine. They still need to adjust my body by yanking on the sheet beneath me. “Pull a quarter.  Pull a half. Pull one.” When the lasers are lined up with my tattoos, they leave the room. I hear the door creaking as it closes, and I wait.

The CT parts move into position. The machine then makes a single smooth rotation and forms a CT image of my pelvis which appears on the computer screens at the desk. Then the tech compares a digitally reconstructed radiograph (DRR) with the scan for fine alignment. The scanner parts are moved back to their resting positions, and I wait while things are lined up. Sometimes the tech remotely adjusts the table before the treatment begins.

There’s a dull thud a few minutes later which I assume is the accelerator powering up. A red light on the wall starts flashing. There’s another thud followed by what sounds like a swarm of cicadas as the machine starts to rotate. This time the machine’s movement is a little jerky.  (Dr. Howard told me that happens as the collimators in the treatment head adjust, shaping the treatment beam.)  It makes one full rotation, pauses for six seconds and then rotates in the opposite direction.

Occasionally the machine will stop and beep. They told me afterwards not to worry, because automatic sensors stop it if the sheet got too close, and no, it wasn’t continuing to fry my innards. They had to reboot the computer system during another treatment. You’re sure everything is OK out there?

The machine stops and I can hear the blast door opening. The techs lower the table as I pull up my pants. They remove the mold and help me sit up. I say, “See you tomorrow.” Then I make a beeline for the bathroom.

Every Tuesday they take my weight, and then Danielle escorts me to an exam room and asks me the following questions:

“How are you feeling?”
“Pretty good.”
“Any problem with diarrhea?”
“Not enough to need Imodium.”
“Any problem with urination?”
“Nope.”
“How’s your energy level?”
“It sucks.”
“OK, I’ll tell Dr. Howard you’re ready.”

Some side effects can be debilitating. A friend of ours, who is really skinny, suffered radiation burns to his lower abdomen that were so painful his wife had to drive him to his appointments lying flat in the car. The mother of someone with whom Peg works has to drive 40 minutes to her sessions and sometimes is so tired she can barely get out of bed.

Diarrhea has been the worst side effect. I initially thought it was because I no longer had a gall bladder, but it was much worse than that. The first bowel movement of the morning is normal; after that it’s watery like my colonoscopy prep. I can hear my intestines gurgling and I get sudden urges for the next few hours.

Fatigue has been the most frustrating. I have a long list of things I’ve wanted to do since I retired, but motivation is near impossible. I want to nap all the time, but I fight the urge, which does me little good. I’m still tired and nothing gets accomplished.

Dr. Howard comes into the room a few minutes later and goes over what the nurse has told him. I verify my answers for him, and he says, “You are doing remarkably well. I’ll see you next week.”

During one visit I asked him, “What’s the chance of recurrence?”
“Let me look at your pathology report.”
“Gleason 9 with EPE (extraprostatic extension.”
“Yes…I think we have an 80-85% chance of cure.”

This wasn’t surprising given my tumor was aggressive. If I’m lucky, any recurrence will be slow and late enough that something else will kill me first.

My visits with Dr. Howard are short because I am a physician and not a typical patient. We speak the same professional language and have an intuitive understanding of each other. (Peg says we share “the secret handshake” that grants me access to special courtesies like being released from the hospital three hours after my prostate surgery.)  I’ve had very few side effects and there is little need to spend a lot of time with me.

Lest you think the physician visit is superfluous and merely a reason to charge for the visit, I can assure you it’s not. He or she is monitoring a patient’s progress and needs to be aware of anything that might require altering the treatment plan.

The average patient is likely to be overwhelmed with a cancer diagnosis and subsequent treatment. Nurses have a special role as the intermediary. Patients will often impart far more information to the nurse because “I don’t want to bother the doctor.” They pick up on a patient’s non-verbal cues such as reluctance, anxiety, frustration, or anger. And it’s not unusual for a patient to tell the nurse one thing and the physician something entirely different or contradictory.

I got a garden-variety cold the last week of treatment and I was far more tired than usual. (I suspect it’s because my niece had one the week before me. She is a pre-school nurse, and her charges are disease-spreading vermin who rarely suffer as much as adults with the same maladies.) As I left the treatment room the second to last day I said to the tech, “I’d like to say I’m gonna miss this but I’m not.”

Finally, it was over. I dragged my tired ass out of the locker room and rang the large bell sitting at the desk, signaling the end of treatment. I said goodbye to Danielle and hugged Carla on the way out. The staff was great, and I can’t thank them enough.

It’s been a few weeks since I finished treatment. The diarrhea has slowly gotten better, but I still have a throbbing, painful hemorrhoid reminding me every day. I’m less tired which may be due to more sunny weather as well as recovery.

I’ll get my first post-radiation PSA and see Dr. Howard at the end of June. It probably won’t be down to zero because radiation therapy isn’t like a laser blasting everything in its path. Instead, it kills some cells and damages the DNA of others so those cells can’t replicate. (How Radiation Therapy Treats Cancer-NCI)

I’ll discuss the aggravation of dealing with billing in another post, but the ballpark estimate of charges for my treatment is around $69,000.

Featured image © Can Stock Photo / focalpoint

Saga Redux

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In December 2019 I had surgery for prostate cancer after my annual PSA levels, which I’d beengetting since 2007, started to gradually increase in 2017. The surgical pathology report showed my tumor was more aggressive than the biopsies, and even though the resection margins were clear, the tumor had already started to extend beyond the prostate. Radiation treatment for a recurrence sometime in my future was likely inevitable. I would get PSA tests every three months for a couple of years, then every six months if they remained negative or stable. Eventually, if all was well, I’d get annual PSA testing for the rest of my life.

My PSA levels during 2020 were <0.014 ng/ml, below the level the test can detect. The first one of 2021 was 0.015 ng/ml, a very insignificant increase. My levels rose again slightly before hitting a plateau between 0.022 – 0.027ng/ml. In December 2021 Dr. Fine, my surgeon, recommended I get tested every six months. In June 2022 the result was 0.023 ng/ml, and I was relieved it had gone down.

Six months later my PSA was 0.044 ng/ml, almost double the previous level.

I sat at my desk for several minutes, starting at the results on the monitor. Intellectually I’d known this was a possibility, but now it had become reality and I wasn’t sure how I felt. It wasn’t a death sentence and the low level meant I didn’t have a large cancer with metastases. I was more worried about how Peg would react.

“My PSA was point-zero four-four.”
“Ok. How do you feel about that? It’s been a good three years.”
“I dunno. I’m not surprised but I’m not sure what to do next. I should probably ask Dr. Fine what he thinks.”
“Well, I’ll support whatever you want to do.”

Now, back in the good (or bad) old days, before e-mail, smartphones, and websites, I called patients on an antique, corded landline to discuss important issues, like abnormal Pap smears and biopsy results. Now most large health care organizations use MyChart, an application that allows patients to schedule their own appointments, communicate with their healthcare providers, view their medical records and test results and pay outstanding bills, all while adding another degree of separation between patients and said providers.

My health care organization, Suburban Medical Center, is more interested in efficiency and revenue than customer service; their medical providers are tightly scheduled and controlled. They prefer to communicate via email, often after hours or during a rare break.  There are no direct phone numbers to any of the offices; one has to call the generic department number. If I want to talk with a physician’s nurse, the department personnel might try to contact her (usually her).

I sent a message to Dr. Fine through MyChart.

Me: Level has doubled. Now what?
Dr. Fine: Since lower than 0.05, I recommend repeat PSA in 3 months. We can follow it a bit closer. If it continues to rise, we would consider planning for salvage pelvic radiation therapy.
Me: Pelvic salvage sounds like a sunken ship. So is this likely tumor cells, residual tissue or Karma messing with me?
Dr. Fine: Not Karma Salvage RT sounds bad but can provide cure for you. We went 3 years with just surgery which is great for your very aggressive cancer. If you’d like, I can arrange a visit with our radiation oncologist, Dr. Howard.
Me: Only if you think we’re at that point. It seems the experts don’t agree on the threshold; 0.05, 0.1 and 0.2 are the numbers I’ve come across.

Whether to treat or continue monitoring depends on the level and the rate of PSA increase, but in the end it’s what the patient wants to do. Ultimately, I decided that continuing to follow PSA levels would only increase my level of anxiety and delay the inevitable.

I asked the office to set up a referral and ran into my first problem. Someone entered a referral to Hematology/Oncology. I tried the “Find a New Provider” option in the application, but Radiation Oncology didn’t appear on the list. I found Dr. Howard on the organization’s general website but there was no option for making an appointment. Round and round we go.

I thought making an appointment in person would be more expedient, given the office is only a few miles from my house. Carla, a diminutive, cheerful woman greeted me as I walked in.

“My name is Carla. How can I help you?”
“Is this Dr. Howard’s office?”
“Yes, it is.”
“I had surgery for prostate cancer 3 years ago and now my PSA levels are going back up. Dr. Fine suggested I talk with Dr. Howard about radiation. I’ve been trying to make an appointment and it hasn’t been easy.”
“How soon are you hoping to see him?”
“Sometime in January is fine.” (I didn’t want to ruin Christmas with potentially bad news).
“Well, let me see what I can find.” She looked at the schedule for a few minutes.
“He’s got an opening on Tuesday January 10. You’ll meet with his nurse at 8:30am and she will go over a lot of information, then you’ll see Dr. Howard at 9:00am.”

I knew Peg would want to come to the appointments because she cares deeply about my wellbeing and doesn’t trust the health care system as far as she could throw it. She also asks far more questions than I do. I mostly wanted to talk about whether radiation was a good idea, how long it would last and what side effects to expect.

There were several other people in the waiting room on our appointment day. Everyone had to wear masks, but for some people rules are mere suggestions. There was an old guy in a wheelchair whose daughter hovered over him while he took sips of coffee in between hawking up hairballs, sans mask. Why have a coffee machine in the waiting room if you’re supposed to keep your face covered.

Danielle, the nurse who does pre-consult counselling, called us into a room and, over the next 25 minutes or so, gave us an overview of radiation treatments, side effects and how to deal with them, and warning signs like rectal or urinary bleeding. I don’t remember a lot of details; you’d probably have to ask Peg. Having the nurse see the patient first is probably a good idea, especially with elderly patients, given that nurses tend to be far more patient. She gave us a packet of information and left.

A few minutes later Dr. Howard came into the room and gave us a warm greeting. He was a tall, thin bald guy who reminded me of Ru Paul. I shamelessly told him I was a retired physician; that often changes the tenor of the interaction. There’s no need to dance around delicate subjects like clinical judgement, diagnostic or therapeutic uncertainties, disability or death.

“We’re here because my PSAs have gone up relatively quickly in the past six months. Given my tumor was more aggressive than the biopsies and there was extraprostatic extension, I figured we’d be doing this sooner or later. Is there an advantage to doing this now over waiting and following PSAs?”
“I know what I’d do in your situation. Radiation is like battling an army. I can fight against 1000 soldiers or 10,000 soldiers. So, doing it now increases the chance of cure.”
“So, how do you know where you’re shootin’?”
“We direct radiation at the bed where the prostate was. Before treatment we run what’s known as a CT simulation and map out the area. It takes about 2 weeks for the radiation physicist and me to set up a program. We’ll call you when we’re ready to start treatment. You’ll come in five days every week, but initially we’ll be putting you in to different time slots. You’ll have a regular time slot in a week or so as other patients finish their treatments.”
“How long is this likely to take?”
“Usually about 37-40 treatments. We’ll start doing PSAs again in about three to four months.”

I left with an appointment the following Tuesday at 4:00pm for the CT simulation.

Preauthorization

There’s a meme on the Internet that exquisitely illustrates the differences between the American and Canadian health care systems. (Since I don’t know if this is copyrighted, click here to view.)

Breaking Bad Canada
You have cancer.
Treatment starts next week.
END

Just because you have insurance doesn’t automatically mean the insurance company will approve payment without question. They require approval for anything that is likely to cost them a lot of money. Our insurer is very good at authorizing treatment. Other companies make their subscribers jump through a lot of hoops, even for cancer treatment, looking for ways to weasel out of paying. (A friend of ours whose wife ultimately died of her second cancer had to fight for things our insurer would have approved without question.)

Peg works for our insurance company, which stresses the employees are the “first line of defense against waste, fraud and abuse,” and as such are diligent guardians of precious health care dollars. And did I mention she hates the health care system in general?

She called our insurance company to ask about preauthorization for my simulation and treatment. This started a week-long exercise in futility, prompting her to wonder, “How do they manage to open the doors in the morning?”

“I started with one of our care coordinators who was very helpful. I asked about getting a pre-authorization for the CT simulation and therapy and how much this was likely to cost us out of pocket. She told me Suburban Medical hadn’t submitted pre-authorization requests yet, so she called Linda in Radiation Oncology. Ultimately, they determined there was no need for the pre-authorization for the simulation because it’s not for diagnosis. We’ll need it for treatment, but they can’t provide a cost estimate until after the provider submits a treatment plan.
“So, then I called someone else to try and get a ballpark figure for radiation treatments. He found general cost estimates for prostatectomy and brachytherapy but nothing for radiation. He suggested I call Suburban Medical, which I did but I left a voicemail and haven’t heard back.”

A week later she tried again.

“I called the care coordinator again; she hadn’t gotten a pre-auth yet, even though it’s been ten days since your consult and your simulation was at the beginning of this week. Suburban Medical told her she wouldn’t get any requests until the imaging results were available. It usually takes a couple of days to approve it, but she said she’d fast track it for us before treatment starts.
“I called Suburban Medical but whoever I spoke with couldn’t supply any cost estimates. She suggested I call our insurer back, which I did. Our rep said the provider should have this information easily available since this is their business. He’d need more information because estimates are based on the individual provider, the specific plan and reimbursement contract. He did say, ‘You’re likely to blow through your deductible and out of pocket before this is over.’
“I finally gave up and went to Google. Estimated costs for radiation therapy for prostate cancer recurrence range from $33,000 to $67,000.”

Wow!

I’m fortunate having insight into the health care system as well as a tenacious woman looking out for my interests. Imagine, though, the aggravation and anxiety a person with little disposable income has to endure, navigating through a confusing bureaucracy and wondering how to pay for several thousand dollars of treatment while coping with a cancer diagnosis.

I’ll discuss the simulation and treatment in my next post.

Featured image © Can Stock Photo / bertoszig

The Prostate Saga – Rehab

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WARNING: This post contains material of a sensitive and sexual nature. If you are easily embarrassed or squeamish, you might want to sit this one out.

I saw the Urology Department Physician Assistant the week after my surgery to take out my catheter. She gave me a prescription for 50mg sildenafil (generic Viagra) tablets and told me to take a half tablet every night “to keep the blood flowing” – a prophylactic Roto-Rooter®. I made an appointment with her and the Vacuum Erection Device Clinic for January as “the December clinic had already passed.” I was supposed to talk with the clinic about acquiring a “medically approved” vacuum erection device in January, but I pushed to get it ordered in December since they run upwards of three hundred bucks and I’d met my deductible for the year.

I got a mysterious text message from FedEx alerting me to a delivery from upcrx.com that required my signature. Often “signature required” means either someone is sending alcohol, or the IRS wants to do an audit. Google helped me find University Compounding Pharmacy in San Diego but did nothing to alleviate my confusion.

The package arrived the following week. I scrawled my name on the driver’s tablet and I now possessed my very own prescription “Austin Powers Swedish Penis Enlarger.” I wasn’t supposed to use it until after my postoperative appointment in January, and then only “under medical supervision,” lest I somehow injure myself.

I had an appointment in January with Dr. Fine for a postoperative visit. The PSA level I’d had drawn the previous week was undetectable; I’d get a PSA level done every three months for a year, then every six months if all went well.

He asked about my recovery.

“It’s going fine. The big incision burned every time I moved but that went away in a week and I used the Norco maybe three times. I got by on Tylenol. And I’m back to my pre-surgical level of incontinence.”

His eyes lit up!

“You should really see one of the pelvic physical therapists. There are a couple of people who specialize in male incontinence therapy.”

“I’m fine.”

“You really should consider it; nip it in the bud right now.”

(Like I have the time or inclination to have some dude teach me Kegel exercises, which I’d taught women for decades.)

“Ok, I’ll give them a call.” (No, I won’t.)

Many physicians are hardwired to offer as many labs, procedures, and referrals as possible. That is probably why sleep studies have been such a standard for anyone who is fat, diabetic, hypertensive, and/or chronically tired. He gave me the phone number which I tossed into the trash on my way to the car.

It’s been seven months since surgery; I don’t wear underwear shields anymore and the urgency is almost nonexistent. I may not be able to write my name in the snow but it no longer feels like I’m trying to urinate through a urethra in a death grip.

The following week I saw the P.A.  She had asked me to come in early because she had to go somewhere. Today she was a little frantic and hurried through her instructions.

“You’ll be talking to Jonathan about the vacuum. Stop taking the Viagra while you are using it. Try the Viagra after a couple of weeks. If you don’t see any results after several tries, it’s time to open this little white bag and take the pill that’s in there. If you’re still not getting any results after 2 months, you need to come see me. Here’s an instruction sheet. Now I have to go…”

My next stop was the pretentiously named Vacuum Erection Device Clinic. I figured I’d be in a classroom with several other men discussing our surgical recovery, led by a physician in the requisite white coat giving us a talk on the mechanism of tumescence and how our recent surgery had interfered with function.

Instead, I went to another room and met with the “physician liaison” (read: equipment rep).

“I’ll need to order your device and when it comes in, we can talk about how to use it.”

“Uh, I got it last month.”

“Ok, then. Here’s what you do. Put it over your penis. Pump the vacuum for five or ten seconds, then wait forty-five seconds. Release the vacuum, wait a minute, and then pump it again for five to ten seconds and wait forty-five seconds. Do that for 10 minutes a day. If you have any questions, here’s my card.”

I wasted an afternoon for this?

How an erection works.

The cross-section of the penis looks like a cartoon monkey face. The shaft of the penis contains two spongy cylinders, the corpus cavernosum; a sizeable artery runs through each. A vein flanked on each side by an artery and a nerve runs above the corpus cavernosum. All this is surrounded by a layer of fascia, like a hot dog casing. A third spongy tube, the corpus spongiosum, surrounds the urethra and runs the length of the shaft below the corpus cavernosum while the dorsal penile vein runs the length of the shaft on top. All this is enclosed in loose tissue and covered by thin, flexible skin.

The arteries in the corpus cavernosum normally aren’t fully open, which is why men don’t have permanent erections. When the brain is stimulated, a combination of nerve impulses and chemical signals open the arteries which fill the corpus cavernosum with blood. The engorged tissue presses on the veins, blocking return blood flow and, voilà, an erection is born.

It’s been suggested that men hit their sexual peaks at 18 and it’s downhill after that. Research, however, shows men’s testosterone levels peak in their 30s before gradually declining. Getting an embarrassing, spontaneous erection for no apparent reason disappeared by my late teens.  Sexual function can decline as early as one’s 40s; I started noticing a difference in my late 40s. Other things can affect sexual drive and function besides purely aging:

The nerve bundles required for achieving an erection are often damaged during a radical prostatectomy. Scarring around my prostate required taking out the neurovascular bundle on the right side. The left side was spared but the trauma from surgery is enough to keep the remaining nerves from doing their job. It may take up to two years before being able to achieve an erection with or without ED drugs. If that doesn’t work, the alternatives are injections into the penis or penile implants.

This is my device. It has both battery-operated and manual vacuum pumps which attach to an acrylic cylinder. There are five silicone rings (sizes 5 to 9); the cone is used to slip a ring onto the other end of the cylinder. The ring ejector twists to push the ring onto the penis before removing the cylinder to maintain the erection. The body shield is that circular thing resembling a old-fashioned floppy disk drive and provides a barrier to prevent scrotal skin from being sucked into the pump. The gel is used to form a seal around the base of the pump and to lubricate the penis; without it the penis will drag along the cylinder wall like an anchor on concrete.

Note to self: make sure to grab the correct white squeeze tube: the lubricating gel tube, not the menthol gel I use on sore muscles.

The Vacuum Erection Device, aka the “Austin Powers Swedish Penis Enlarger”

The caveats in the instruction manual were disturbing.

“Vacuum therapy may cause a small “blood blister” on the head of your penis. This is normal and not harmful.”

“The rings may bruise the base of your penis. Some bruising is normal and should not be cause for alarm.”

Wait, what? In what alternative universe is a bruised and blistered penis “normal?”

“If you wear a ring for more than 30 minutes, you may severely bruise or damage your penis.”

So, if that happens, do I just get a new one from Amazon with 2-day Prime delivery?

I looked over the instruction sheet I’d gotten from the P.A.

You were given samples of ED medication to try at your leisure. Please use the paper form you were given (to) track your response and side effects of each medication. The goal is for you to try one tablet every 3rd day followed by (significant) stimulation.

  • Tablets work better on an empty stomach
  • Tablets take one hour to become effective
  • Space out your trials by 2-3 days at the minimum

If tablets do not work, you may still have intercourse with the vacuum rubber bands.

Common side effects – headache, facial flushing, nasal congestion

If you are on Cialis and are experiencing leg cramps – Please stop Cialis immediately as Cialis can sometimes be linked to tendon inflammation, possible rupture.

Oh, goody!

I discovered the vacuum doesn’t work immediately, which was disappointing. One cannot hope to instantly inflate the penis like a balloon that a clown twists into animal shapes for kids at a party. At first it took fifteen minutes to achieve anything resembling an erection, which decreased to around five minutes after three months. The least they could do is make pumps entertaining with indicator lights and an alarm that goes off when one has reached maximum height (or is it length?).

Anyone who played with a vacuum cleaner hose as a kid knows it can inflict some pain if left on a body part for too long. Moving blood into a penis with negative pressure is an uncomfortable process and certainly not erotic. And few things are worse than having a large chunk of scrotal tissue suddenly sucked into the cylinder along with a testicle. The barrier did not help at all; it was too flexible and got drawn in as well.

It didn’t take long for one of the rings to break and the replacements cost twenty bucks each. I ordered a different kind of ring that looked like a flat, silicone bagel (the penis goes through the hole and the surrounding material blocks wandering skin, but it was for a rival brand and didn’t fit my pump. I found another type that looked more like a foam-lined chip clip (or a cigar cutter). I settled on a silicone loop I bought from Amazon.

The battery pump died after a month. The company said they’d send a replacement which never arrived, and I don’t feel like calling them again. The manual pump is equally effective but using it leads to spasms in my right thumb and pain in my right wrist, caused by old nerve damage from two separate lacerations. The recommended forty-five seconds on, one minute off did nothing, even after multiple attempts over three weeks. I finally just pumped and left the vacuum on for several minutes while amusing myself with my Kindle game. (I may not have sexual function, but at least I’m doing my part to delay age-related dementia!) My erections promptly deflated as soon as I released the vacuum, despite the ring. There was never sufficient rigidity to close off the penile veins.

I then tried using 100mg sildenafil without the pump or any kind of stimulation. I got a slight flush but nothing. A few days later I made another attempt. I got distracted doing other things but applied the pump three hours after I took it. I got a reasonable erection which again deflated after taking off the pump and using the loop. I tried the pump again and then manual stimulation which made it last a little longer but still wasn’t anything to write home about. And all this took about 25 minutes, not including the minimum one hour wait for the drug to take effect.

George Burns said, ““Sex at age 90 is like trying to shoot pool with a rope.”

But all is not lost. Men can have orgasms without an erection, although it may take some mental adjustment. If you’re a New Ager into Tantra (and you have a lot of patience), you can have an orgasm using just your mind. Radical prostatectomy removes the prostate and seminal vesicles, meaning there’s no more semen, along with the sphincter between the urethra and the prostate, which normally prevents retrograde ejaculation (semen going into the bladder instead of out the penis). The result is climacturia, the release of urine with orgasm and a common side effect of the surgery. One can prevent this with an adjustable loop around the penis, muscle training or surgery, but emptying the bladder beforehand is the simplest.

More information than you ever wanted to know, eh?

Finally, nothing is more important during post-prostatectomy rehabilitation than a loving and supportive partner. Peg says she would rather have me alive and annoying than six feet under, and for that I am grateful.

Monkey illustration © Can Stock Photo / yayayoyo

The Prostate Saga, Part 2

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It’s a good thing Dr. Fine’s reputation preceded him, or I might not have stayed long enough to meet him. But first, a segue into the genesis of my ire.

When Corporate America took over health care administration, it decided physicians had wasted too much time taking care of patients instead of generating revenue. Large health care organizations began buying up individual physician practices and, in some cases, taking over hospitals. Younger physicians loved this idea: they got a salary, paid vacation and none of the administrative hassles of running a private practice. (I plead guilty, as I joined an HMO for those reasons. I was a poor businessman and I admitted it. The problem was, in many cases, I knew more about business principles than the people signing my paychecks.)

Older physicians balked at being controlled and some of them resisted as long as they could. If you didn’t play ball, The Corporation would find ways to shut you out. If you didn’t contract with the predominant insurers, you became “out of network” and a lot more costly to patients. Other older physicians saw the handwriting on the wall and retired early, the lucky bastards, to stay at home, engage in hobbies, travel or annoy the wife full-time.

We traded autonomy for financial security and ended up with neither.

The Corporation now controlled everything, including your ass, so it could dictate how you did your job. One physician I knew 25 years ago, a hospital employee, said, “I have guys in three-piece suits telling me what to do. And I do it.” Thus, the standard 10-minute appointment was created. No matter how complex the patient, physicians were expected interview, examine, diagnose and treat a patient in the allotted time before moving onto the next one. Or should I say “mooving on”, since patients were now herded through like cattle. (I often threatened to play the Rawhide theme in the hallway during my HMO days. “Head ‘em up! Move ‘em out!”)

If you were a specialist, you got 20 or 30 minutes for consults, even if the patient had cancer. No “wasting time,” like my gyn oncology professor during residency, who spent an hour discussing ovarian, uterine or cervical cancer with women who were still in shock from the diagnosis.

And now, back to our regularly scheduled blog post.

Dr. Fine’s office booked a 30-minute visit at 2:50 p.m. Peg and I arrived about 15 minutes early; she was still in a wheelchair after having foot surgery.  I checked in, sat down and waited. And waited. And waited.

About 40 minutes later a nurse, nursing assistant or whatever, appeared in the door to the inner sanctum and bellowed, “David.”  I got up and wheeled Peg through the open door.

Halfway down the hall, the nurse said, “David, what is your date of birth.”

I told her and she said, “Oh, wrong David.” So, I wheeled Peg back to the waiting room while the correct David was whisked away.

Twenty minutes later she reappeared. “David.” Once again, I wheeled Peg down the hallway, but not as far this time before she realized my date of birth didn’t match what was on her tablet. And, once again, I wheeled a now pissed-off Peg back to the waiting room.

Different women appeared at the magic door, calling names as if they worked in a cheap restaurant, and patients disappeared.

It was now 4:15 pm. I’m normally a quiet, patient type (you shaddap and stop laughing!), but even my patience was wearing thin. The first woman we saw opened the door and called, “David.”
“Which one?”
“Last name Rivera?”
“Yeah, that’s me.”

We were herded into a pen patient room and a few minutes later a very sweet assistant came in to verify my information on the computer terminal (paper charts have all but disappeared). She apologized for the wait and said Dr. Fine would see us soon, but he was running behind.

Peg smiled but said, “We’ve been waiting a long time. Dr. Fine better be a rock star!”

The SYT swallowed and assured us Dr. Fine was indeed was, figuratively speaking, on par with Jimmy Page.

We could hear snippets of Dr. Fine’s conversation with another patient. Another 15 minutes elapsed, then yet another nurse/assistant came in with two books. I don’t recall the titles, but they could be titled, “You and Your Prostate,” and “What You Need to Know about Prostate Cancer.”

“The doctor will be in shortly to discuss your diagnosis.”

Now I was pissed! “I’m a physician! I KNOW my diagnosis; Dr. Ky and I have talked about it and I’m here to talk about getting a surgery date scheduled!” I thought If you’d looked at the record before barging in here, you’d know what’s happened and why I’m here.”

Finally, Dr. Fine entered the room and I understood why he was running late. He greeted us and apologized for running late. “Discussing a new diagnosis of cancer with a patient takes some time and I don’t want them to feel rushed.”

Ok, you earned your rock star status.

He talked at length about Gleason scoring in general. A Gleason score of 6 suggests one’s cancer is likely to grow slowly while a score of 8 and above is likely to be more aggressive and spread quickly. My score of 7 (4+3) put me at intermediate risk and was more concerning than a score of 3+4.  Then he talked about Tumor, Node and Metastasis (TNM) staging and how that relates to overall survival; my cancer stage was T-IIa, meaning no metastases or node involvement. (For more information, go to the Urology Care Foundation educational materials page and download the Localized Prostate Cancer guide.)

Notes from our discussion of prostate cancer and treatment options

We then discussed treatment approaches. I talked about the risks of radiation in my previous post, but the biggest drawback is it turns the prostate to mush. If the cancer recurs, taking out the prostate is next to impossible. Doing surgery first leaves radiation as an option for recurrence.

Surgery removes the prostate completely and, potentially, all of the cancer, but has its own set of risks. Immediate problems include recovering from surgery, including having a catheter in one’s bladder for a week. The surgeon has to cut the urethra (that tube from the bladder to the outside) to remove the prostate, and then sew it back together. One is likely experience some degree of urinary incontinence once the catheter comes out; they recommended getting a large supply of “adult incontinence underwear” along with pads that look like what women wear after delivering a baby.

Surgery removes the seminal vesicles and potentially some nerves along with the prostate, guaranteeing temporary or permanent erectile dysfunction. I would be taking a low dose of the “little blue pill” (sildenafil) every day to “promote blood flow” back into a limp penis. I’d have a checkup six weeks after surgery and then go to the Austin Powers Swedish Penis Enlarger clinic to learn how to use a $300 “medical grade” acrylic cylinder and vacuum pump. For some reason they discourage procuring the much cheaper products available at your friendly neighborhood adult toy store as it could “result in injury.” (Like Ralphie getting his tongue stuck to the frozen flagpole in “A Christmas Story?”)

We agreed to a surgery date right after Thanksgiving. He gave me a card for the Patient Navigator, someone who is supposed to “guide you through the process.” I talked with her once; she told me someone from the hospital “will call you with a surgery date within a couple of weeks. Then someone will call you a week before surgery with questions and instructions.” I used to impart that information to my patients at the end of our visit and didn’t need someone to do it for me.

I saw one of the Urology Department P.A.s (physician assistant) to teach me Kegel exercises, which help control the inevitable leaking bladder after surgery. Women learn Kegels when they are far younger, since they have only one urethral sphincter to men’s three.  I told her I’d been wearing protection for months to which she replied, “Welcome to our world.” The visit lasted only a few minutes. Peg had taught me abdominal core and Kegel exercises to do while driving to client’s houses. She did a better job and for free.

About a week later someone from the hospital’s scheduling department called me while I was driving to a client’s house. My surgery would be on December 2 at 7:30 a.m., a wretched time, as I’d have to be there about 2 hours earlier for preparation (which often takes about 30 minutes). 

“I’m wandering around the Chicago suburbs so now isn’t a great time to talk. How about you give me a call next Monday when I’m home?”

“Ok, that would be fine. In the meantime, I’ll send you preoperative instructions through our website and we can go over them next week.”

 She called and went over my medical history – current and past illnesses; the medications I took; allergies to medications – before going over the same instructions she’d sent the week before. I realize it may seem redundant, but there are people handicapped by a Y chromosome who don’t read or listen and need all the reinforcement they can get.

“Back in the good old days, I used to do all this myself.” 
She replied, “You probably weren’t that busy back then.”

Bullshit. I routinely saw 25-30 patients a day in the office and worked in women with acute problems. I did my own preop H&Ps (history and physical) and dictated it on the hospital’s transcription line. Years later, wrote my reports in MS Word and hand delivered them to avoid hearing, “We can’t find your H&P. Did you forget to dictate it?”

Preparing for surgery

Physicians go through “informed consent” with a patient before surgery or a significant treatment. Ideally, a physician explains what s/he proposes doing, what it is meant to accomplish, the risks and benefits of the procedure (including risk of death, if appropriate), and what might happen if the patient refuses. Then the physician gives the patient time to ask questions, have those questioned answered and, often at the end, sign a permit for said treatment or surgery.

This ritual is supposed to ensure the patient makes a well-informed, intelligent decision while also minimizing the risk of litigation in the event of an adverse occurrence or outcome. In reality, a pissed-off patient can always claim “I didn’t know what I was agreeing to” and some lawyer will take the case. So, many of us believe there is no such thing as truly “informed consent.”

My approach to informed consent for surgery went something like this:

“You need to be at the hospital two hours before your surgery time. They will get you ready for surgery (but it doesn’t take two hours, so you’ll spend a lot of time picking your butt). When everyone is ready, one of the nurses will take you to the operating room, put you on the table, hook up EKG leads and strap you down, so you don’t roll off. (Sometimes we will pick our butts waiting for anesthesia to stroll in.) I will be there before you go to sleep. This procedure is going to take about x hours. You’ll go to the recovery room for about an hour and then sent to your room (inpatient) or sent home (outpatient).

“All surgery comes with some risks: risk of bleeding, infection and injury to something inside. You also have a 1 in 60,000 risk of dying from anesthesia, but you are much more likely to die driving your car, especially in the winter when there are a lot of idiot drivers around.” (For the curious among you, the risk of death from a motor vehicle accident is 1 in 103. I can’t find the odds of dying from stupidity, but the Darwin Award people keep a nice tally.)

If I was tying a woman’s tubes (tubal ligation), I added this:

“You also need to understand nothing is perfect, including tubal ligations. About three out of every 1000 women getting their tubes tied get pregnant, sometimes many years later. A few of those pregnancies will end up in the uterus, but many get stuck in the tube, causing an ectopic pregnancy which can kill you  if not treated. So, if you ever think you are pregnant, you need to see a physician right away.” (I met a woman in Tennessee who had an ectopic pregnancy 13 years after her tubal ligation. She had been bleeding vaginally (and internally) for a few days, not realizing she was pregnant. I found 1300cc of blood in her abdomen.)

Now, that approach was too vague and informal for Ms. “Expectation Management” who thought researching every possible surgical complication was a fine idea, and then expected ME to grill my surgeon on how the team was prepared to avoid them.

I know a lot of the possible complications, which is why I hated gyn surgery! I’m more like Peg’s sister, Michele: Ignorance is bliss.

The day before surgery I had to drink only clear liquids and do a bowel prep. I drank a bottle of magnesium citrate, which is far easier to take than the gallon of NuLYTELY® I had for my colonoscopy prep. But, because a bowel prep can screw up one’s electrolytes, they told me to drink a 20oz bottle of Gatorade four hours before surgery. Yep, 3:30 a.m. Sleep is overrated.

We arrived at the hospital parking lot about 5:30 a.m. and trekked what seemed like a couple of miles to Surgical Registration. I checked in with a woman who was too alert for such an abysmal time. We waited for about 20 minutes, then someone led us on another trek to Pre-Op where I changed into a hospital gown and hopped onto the gurney.

My nurse was an adorable, diminutive redhead with freckles and a pixie cut, too alert and too cheery. She put EKG leads on my chest, a blood pressure cuff on my arm, and poked my finger to check my blood sugar, and started an IV, all while telling me what I needed to do.

“You remind me of my wife.”
“Hey, you brought her here, I didn’t.”

I started laughing so hard she had to retake my blood pressure after I calmed down.

I talked with Dr. Pierce, the anesthesiologist, and reminded him of my paradoxical reaction to Versed (midazolam), a drug used for anesthesia induction and conscious sedation. Dr. Fine appeared a little after 7:00 am for some last-minute discussion and reminders. Surgery would take about two or three hours and I would go home in the afternoon if everything went well.  Then the OR nurse put a bonnet on me, had me kiss Peg and rolled me down to the room. I slid onto the table while the anesthesiologist and the scrub tech introduced themselves and got me ready.
The last thing I remember hearing was, “This might sting a little as it goes into your vein.” Click here if you want to see Robotic Assisted Laparoscopic Radical Prostatectomy .

When I woke up 3½ hours later, it seemed as if only ten minutes had passed. I felt pretty good in large part to the local anesthetic injected around the trocar sites. Even the catheter wasn’t uncomfortable.  I had something to drink and the recovery room nurse had me walk down the hall.  I was home by 3:00 and really happy I didn’t have to stay in the hospital.

The following week wasn’t bad, either. I didn’t have to get up at night because of the catheter. Peg got up at 1 a.m. that first night to empty the bag, but I cut my liquid intake in the evening and emptied it about 11 p.m. which got me through the night. I had six stab wounds for the trocars but only one hurt if I coughed or move wrong, and that only lasted a week. I took three hydrocodone tablets, mostly at night, and used acetaminophen the rest of the time.

My abdomen after surgery
My incisions

The pathology report came back by the end of the week:

Surgical pathology report
Prostatectomy Pathology Report.
A. Right neurovascular bundle margin, excision:
-Neurovascular tissue, negative for malignancy.
B. Prostate, radical prostatectomy:
-Prostatic adenocarcinoma, Gleason score 4+5 = 9.
-The margins of excision are negative for tumor.
-Focal extraprostatic extension, left posterolateral, for a total span of 5 mm.
-Uninvolved seminal vesicles.
C. Bilateral pelvic lymph nodes, excision:
-Six lymph nodes, negative for tumor (0/6).
D. Posterior bladder neck, excision:
-Fibromuscular tissue, negative for tumor.
E. Anterior bladder neck, excision:
-Fibromuscular tissue and focal urothelium, negative for tumor.

So, the cancer cells were worse than the biopsy and it had already peeked out beyond the prostate. Having negative margins means the bad stuff was confined to what was taken out. Surgery turned out to be the more prudent approach.

The catheter came out the following Monday. I had to change underwear frequently for a few days but was back to my pre-surgical level of incontinence by the end of the week. It felt strange being able to urinate like I did before my prostate started squeezing my urethra.

I had an appointment for the Vacuum Erection Device Clinic in January, but that is a whole ‘nother story.

The Prostate Saga, Part 1

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I have something in common with Ian McKellan, Robert DeNiro, Colin Powell, Mandy Patinkin, Warren Buffett, and the Grateful Dead’s Phil Lesh. We’ve all had prostate cancer.

You might ask, “What is the prostate and what does it do?” Well, since you didn’t ask, I’m going to tell you anyway.

The prostate is both a blessing and a curse. Located just below the bladder, the prostate is a collection of muscular glands surrounding part of the urethra, that tube running from the bladder and through the penis to the outside. It has been compared in size to a small apricot. It secretes fluid containing zinc, citric acid and some enzymes which act as a sort of Miracle-Gro® for sperm, aiding in the quest to be the one lucky bastard that fertilizes the egg to create a pregnancy.

The prostate also provides an endless source for amusement for urologists hell-bent on pimping medical students. It works like this. The urologist asks the student to perform a rectal exam on a male patient and describe the impression, then sneer and say, “He’s had a prostatectomy. So, what were you feeling, “doctor?”

However, in our later years, the prostate often enlarges and squeezes the urethra, a condition known as Benign Prostatic Hypertrophy, or BPH. It turns a urine stream rivaling that of a firehose into an annoying dribble that usually ends in our underwear.  

Back in the Dark Ages (more than 30 years ago), we treated BPH with a ghastly procedure known as Transurethral Resection of the Prostate or “TURP.”  A surgeon would put a resectoscope, a lighted tube with a wire-loop cautery at the end, through the penis and drag the prostate out in pieces. I remember seeing men in the recovery room hooked up to 3-liter bags of irrigating fluid to flush out blood and chunks of well-done prostate.

Now we have a group of drugs called alpha-blockers (tamsulosin and others) which make urinating a lot easier. They still don’t make up for the overly large prostate compressing the bladder, which makes us pee a lot during the day and get up two or more times during the night.

The prostate also produces Prostate Specific Antigen (PSA), an enzyme that changes semen’s consistency from Elmer’s glue to runny-nose mucus. Measuring PSA in a blood sample is a screening test for prostate cancer; a “normal” value is ­< 4.0 ng/ml. A value above 10 ng/ml means a 50% chance of prostate cancer. A PSA value of 4.0-10 ng/ml is concerning and often means monitoring more often than yearly.

PSA testing has some of the same limitations as other screening tests. Remember when Gene Wilder promoted CA-125 screening after Gilda Radner died from ovarian cancer? CA-125 only picks up half of Stage I ovarian cancers, and CA-125 can be high with endometriosis, early pregnancy, ovarian cysts and pelvic infection. I had a patient who died of metastatic ovarian cancer with normal CA-125 levels.

A normal PSA doesn’t mean you don’t have cancer, while a high PSA doesn’t mean you do, since levels can increase with BPH, infections and ejaculation within 48 hours of testing. A man I know has been living with elevated PSAs for years despite negative MRIs and biopsies.

I’ve been getting annual PSA checks since 2007, which had been 1.0 ng/ml or less through 2017. It was 1.5 ng/ml in early 2018, but my prostate was larger and neither my urologist, Dr. Li K?, nor I were worried.

However, my level in March 2019 was 2.7 ng/ml. Even though this result was technically “within the normal range,” I couldn’t rationalize an increase this high. Dr. K? agreed and recommended a repeat test in six months (September).

Knowing the health care system often moves slowly, and mindful of the fact that the end of the year (and our deductible limit) was approaching, I got another sample in August, opting for both total (circulating PSA bound to proteins in the blood) and free (PSA wandering merrily by itself like an unaccompanied child) levels. The percentage of free PSA can predict which men with levels between 4 and 10 will likely need biopsies to detect cancer. The higher the percentage, the lower the risk.

May I have the envelope, please? (Drum roll)

PSA, total 4.4 ng/ml
PSA, free 0.4 ng/ml
% total/free 9
Probability of cancer 56%

Well, shit. I sent the results to Dr. K?.

“I want you to get an MRI at our facility. I know our radiologists and trust them.”

I texted my kids with the news, shamelessly figuring it might get their attention as they rarely contact me about anything. It did. No one actually called, but they did text me replies, the communication choice of Millennials everywhere.

“Is there anything you need?”
“How bad is it?”
“Am I in your will?”

No one texted that last one but I’m willing to bet it was in the back of someone’s mind.

The MRI
An MRI is something everyone should experience once, like visiting Graceland, then check it off the bucket list. Have another go at it? No, thanks, I’m good.

I had my MRI the day before my 65th birthday. Imagine stuffing a bratwurst inside a cannoli tube and then loudly banging on a variety of metal objects, at varying tempos, for an hour while telling the bratwurst to lay still. Oh, and we’re going to roast you low and slow.

The earplugs they provided did little to block the noise. A sleep mask would have been more helpful as the top of the machine was about 2 inches from my eyeballs, a bit unsettling even though I’m not normally claustrophobic. I started getting really warm about thirty minutes into the procedure. I complained to the tech who said, “We’re almost done. Just a few more minutes.”

Yeah, right.

Finally, it was over. The tech helped me off the table and said I should get results in 1-2 business days. That was on Tuesday, but I hadn’t heard anything by Friday.

Peg asked, “So, are you going to call them? This is ridiculous. It’s been three days.”
I said nothing.
“So, you think no news is good news?”
“Pretty much.”

On Saturday I got a text message, “You have new test results!” from MyChart, an electronic health record application and one of the few things Epic has done right. My MRI result was posted, and I figured it must be good news since no one had called me. Wrong.

“IMPRESSION: Overall PI-RADS 4: Clinically significant prostate cancer likely within the left posteriolateral peripheral zone.
FINDINGS:
PROSTATE:
Size: 33cc, 4.4 x 3.9 x 3.8cm in the greatest transverse, AP and craniocaudal dimensions. Central zone/transitional zone: There are multiple nodules of varying signal intensity on T2 weighted imaging within the central-transitional zone in an appearance consistent with benign prostatic hypertrophy.
(No shit, Sherlock.)

Peripheral zone: Oblong ill-defined 1.2 x 0.8 cm lesion within the left posteriolateral peripheral zone at the base and mid gland demonstrating markedly hypointense signal…Mild capsular abutment without extraprostatic extension.”
(Translation: You have a tumor about the size of a small blueberry in your apricot and that’s not good.)

Most physicians have had to give patients bad news during their careers, but it’s a bit different when you’re on the receiving end. I wasn’t surprised given the relative rapid rise in my PSA and the probability given on my last test. Still, I stared at the screen for several minutes before printing the report and giving it to Peg.

She was livid.

“No one should get a cancer diagnosis without a phone call from a physician! What if you were someone with no medical background?”

Well, I can’t argue with that.

Sometimes I’ve merely confirmed what patients had already been suspecting. One was a woman I met during one of my locum tenens jobs. I curetted her uterus for heavy bleeding and knew she had cancer just by the tissue’s appearance. A few days later I asked her to come to the office to talk about the results. She had an aggressive endometrial stroma sarcoma that would end her life in less than a year. The irony of working in hospice with terminally ill patients was not lost on her. She was calmer than I would have expected, but I didn’t know what she might have felt in the following weeks.

Peg found my lack of response unsettling.
“Are you not saying anything because you’re worried?”
“Not really. I’m processing. Would you like me to be hysterical?”
“No, I just want you to react! At least say something.”

I didn’t say much to Peg about the probability of having cancer. Maybe it was the physician in me that was used to dealing objectively with bad news. And it was somewhat perplexing as I figured my crappy lungs would eventually do me in.

I texted my kids again with the MRI results and that I’d need biopsies. Number two son said, “Well, if you have to have cancer, it’s good to have the boring kind.”

My eldest texted back, asking if the cancer had spread. Using talk-to-text, I said, “Nodes and pelvis are clear,” which it changed to “Nodes and Elvis is queer.” Gotta love technology.

I was looking for a client’s house somewhere in the northwestern part of Chicago when the office called to set up prostate biopsies. I’d already made an appointment for the following Wednesday to discuss the MRI results, so the scheduler changed the appointment to the procedure. She also said I had to take Thursday and Friday off.

I sent an email to my handler. “I need to take off next Thursday and Friday. I’m having a procedure done and I need to lay low for a couple of days.”

He replied: “How long have you known about this procedure? I need a lot more notice to move things around. I can’t just move things around so easily.”

Ok, wiseass, I was trying to be discrete. Now I’ll be blunt.

“I just found out about it yesterday while driving around Chicago.  I had an MRI last week that indicates probable prostate cancer. They called to set up an appointment for biopsies.”

Silence for several hours. Then: “understood.”

Prostate biopsies are usually done transrectally (through the rectum). The urologist inserts an ultrasound transducer into the rectum, then passes a spring-loaded biopsy needle through a guide and takes several samples, using the ultrasound image for guidance.

The only thing that produces pain in the large intestine is distension (you can clamp, cut, or stitch it with impunity), so, poking a needle through the rectal wall isn’t terribly uncomfortable. Injecting local anesthetic into the prostate produces a familiar pinching sensation, but it doesn’t burn as it does when injected into skin. And it’s much less painful than the old transperineal route, which required an incision between the scrotum and anus, known colloquially as “the taint,” and often done under general anesthesia.

Peg and I arrived early for my 5 p.m. appointment but then sat for 45 minutes in a nearly empty waiting room. The reason for that will become apparent in Part 2.

When we were finally granted access to the inner sanctum, Dr. K?’s nurse led me to the procedure room. The first thing I noticed was an instrument stand covered with a sterile drape on which sat several small containers filled with Formalin, a long needle attached to a syringe, and something that looked like a light sabre handle with a needle sticking out of the business end. She told me to take my pants off and put on the exam gown which barely covered my ass.

After Dr. K? engaged in the usual pre-procedure pleasantries, I lay on my left side on a very uncomfortable examination table, then she inserted the ultrasound transducer through my anal sphincter and halfway to my tonsils. It’s like using a butt-plug with fangs, with none of the erotic sensation.

“First I’m going to inject local into the right side of your prostate.” About thirty seconds later, she said, “Now the left side.”  She waited a few minutes for the lidocaine to do its thing before she started sampling.

The biopsy instrument is a very fine, spring-loaded needle that snaps when one pulls the trigger, capturing a piece of prostate tissue. It’s less noticeable than the anesthetic injection, but still made me wince slightly every time I felt that snap. I lay still and listened as she called out the locations to her assistant, who put the pieces into the small containers.

“Left apex.” *snap* (wince)
“Left mid.” *snap* (wince)
“Left base.” *snap* (wince)
“Right apex.” *snap* (wince)
“Right mid.” *snap* (wince)
“Right base.” *snap* (wince)

She told me to expect blood in my urine and stool for a couple of days and to call if I started passing clots. Clots???

“I’m going to call you with the results before I release them to MyChart.” (You’d better or Peg will have your neck. )

I made a follow up appointment for two weeks later.

My urine was slightly pink that night, but yellow the next morning, like a fine chardonnay. The only rectal bleeding was from an irksome hemorrhoid. Yeah, getting old sucks. I think I could have easily gone back to work, but I welcomed the break.

Dr. K? called me a few days later to tell me she’d received the pathology report; it was what we’d both expected.

Biopsy pathology report
Prostate needle core biopsy, right base:
-Atypical Small Acinar Proliferative (ASAP), in one of two cores
Prostate needle core biopsy, left mid:
-Adenocarcinoma of prostate, Gleason 4 + 3 = 7 (Grade Group 3)
–Tumor in 1 of 2 cores, tumor length 1mm, discontinuously involving 5% of submitted tissue.

Pathologists grade tumor cells based on how abnormal they appear under a microscope. Prostate cancer cell grades number 1 through 5 with five being the worst. The Gleason Score takes first and second most predominant grades and adds them together. The least malignant score is 2 (1+1) while the most malignant is 10 (5+5).  A Gleason score of 4+3 is worse than a score of 3+4, even though the sum of both is 7.

I’d considered radiation treatment as the lesser of the evils but the small amount of tumor in the biopsy relative to the size of the lesion, along with the “atypical” cells on the right side convinced me surgery was the better approach. I like having tumors in a jar; surgical specimen pathology is often more severe than the biopsies.

We saw Dr. K? the following week to discuss options, but I’d already settled on surgery. The problem with doing radiation first is that if the cancer recurs, surgery is nearly impossible because radiation has turned the prostate into mush, and you’re screwed. If you have surgery first, radiation is available if the cancer comes back.

There are considerable risks to radiation: difficult or painful urination; diarrhea, bowel cramping, fatigue, “sunburn” on abdominal skin, and the possibility of developing cancer in bladder or bowel. A Facebook buddy undergoing radiation for colon cancer told me “may I suggest rather than using the very pleasant descriptor, “you may experience occasional diarrhea” with “by week three you will have come to believe you’ve eaten and (sic) entire jar of jalapeños and are pissing pure lemon juice.”

Dr. K?, being a general urologist gave us the names of two colleagues, Dr. Fine. and Dr. Howard, both of whom specialize in robotic radical prostatectomy. Peg caught her off guard asking, “Who would you personally go to and who has the better bedside manner?”  She replied without hesitation. “Dr. Fine.”

I made an appointment with Dr. Fine for the following week.

Next month: To Surgery, and Beyond!

Apricot: © Can Stock Photo / Tigatelu
Prostate © Can Stock Photo / rob3000