Tag Archives: radiation therapy

Saga Redux Part 2

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

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