Tag Archives: PSA

Saga Redux

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, Part 1

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