My prostate cancer diagnosis hadn’t fully sunk in when I met with the first radiation oncologist a few days later. I walked into the new facility, sat down in the waiting room, and looked around. There were free sodas, snack bars, and candy bars for patients.
I was surprised. A cancer center was giving patients an unlimited supply of highly processed foods and concentrated sugar?
“Doesn’t sugar feed cancer?” The science is more nuanced than that. The sugar you eat doesn’t selectively travel to a tumor and “feed” it. But cancer cells commonly alter their metabolism, and many consume glucose at high rates, a phenomenon known as the Warburg effect.
That does not mean that not eating sugar starves cancer. The body maintains blood glucose even when you’re on a low-carb diet. But it does make the idea of a cancer treatment center handing out sugary sodas and candy somewhat jarring. A waiting room can help teach patients something about what the people treating them think matters. This one was teaching that nutrition doesn't.
My mind wants to go to a conspiracy theory, but I resist. Stay focused, Keith. This is going to be an important conversation.
I went in planning to talk about my concerns about the side effects of androgen deprivation therapy. The radiation side effects worried me less. So shortly after introductions, I told him my concerns. I immediately sensed a shift in his initially kind demeanor. It was subtle, but the shift was definite.
Once I’m done telling him my concerns, he immediately downplays them by saying the elderly are the ones who get those side effects, which I know isn’t true. He also told me he would be paternalistic with me, which was his way of saying he would tell me what I should do regardless of what I thought. I sensed it wouldn’t go well from then on, but then it suddenly got worse.
When a nurse knocked on the door, he excused himself. He said he had to talk to an insurance company about getting something approved for a patient. I could hear him talking loudly in the hall, clearly agitated but with controlled anger.
He returned to the exam room red-faced and aggravated. The negative energy in the room shifted into high gear, and I gave up hope for a fruitful conversation.
He told me the insurance company doctor told him he would never approve the request for the other patient and wanted to tell him personally. Would he have told another patient that if they weren’t physicians? Why did he feel compelled to tell me that? Because I’m a doctor, and he thought I would commiserate with him? I noticed a significant lack of self-awareness from this physician in a very short time.
Then, he continued the paternalistic talk without asking how I felt about what he told me. He referenced something about a theory about cancer stem cells as a reason why I must go on ADT, but he never quite finished his line of thought.
I tried to bring him back to my concerns about ADT, and then he started to tell me why radiation is safer these days. I told him I wasn’t as concerned about radiation side effects as I was about ADT side effects.
He then said that any good doctor who has read the literature knows that I need ADT and radiation. I wasn’t sure if he was jabbing at me to intimidate me into shutting up. My heart sank. This guy potentially has my life in his hands, and I don’t resonate with him. That’s not a good combination.
At that point, he began to tell me the treatment plan. He’d request approval from my insurance company for an Axumin scan to look for residual tumor. An Axumin scan is a specialized positron emission tomography (PET) scan approved for evaluating prostate cancer recurrence. He also instructed me to see my urologist to begin ADT, and then eight weeks later, he’d start at least five weeks of daily radiation therapy.
By the way, I’d have a balloon inserted into my rectum and blown up every time I came in for radiation. He said this was to help delineate areas for treatment and reduce the chances of radiation exposure to my rectum. In addition, he told me side effects from radiation would include irritation of the urethra and bladder, which would probably wake me up at night.
So, I’d have fatigue from ADT, plus I’d be waking up at night due to the radiation. My fears were starting to be confirmed. He finalized his paternalistic discussion of my treatment plan and then asked me the strangest thing. He asked, “Is that fair?” What do you say to a question like that in this situation? Yes?
I said, “It is what it is.” At that point, I wanted to get out of there as quickly as possible, so I shut up and let him finish. When he asked if I had any questions, I lied and said no. I didn’t want to be talked down to anymore. Thankfully, the visit was over, and I left.
I cried in the car on the drive home and for the next hour after I got there. I cried so hard that my body was shaking. I had let him beat me down to an emotional mess. He took away any sense of control I might have had in this situation. In one small follow-up study of women with breast cancer, a greater sense of control eight months after diagnosis was associated with less recurrence over the next twenty years.
What stood out to me is that a greater desire for control was associated with more recurrence.
Two of my close friends are friends with the physician owner of that clinic and asked me how my appointment went. I had initially wanted to see the owner, but she was out of the country. I told them my appointment didn’t go well and that the physician I met with had a terrible bedside manner.
They quickly emailed their friend, who was out of the country, and asked her if she’d meet with me. The following day, I received a call from the clinic asking me to schedule an appointment with the physician who owned the clinic.
I met with her the following week, and that meeting didn’t go much better than the first. She did not start our conversation by asking how my first appointment with her colleague went or even apologizing for my bad experience. Her first words to me were, “Why did you wait so long to have a prostate biopsy?”
Okay, I see she is going to deflect that her partner exhibited poor bedside manner, and instead turn the tables and try to make me feel bad about waiting to have a prostate biopsy. I tried to explain my prostatitis symptoms and my urologist’s decision to hold off on the biopsy until the prostatitis symptoms were under better control. She wouldn’t listen to any of it.
She then spent a good part of our appointment questioning the care of my urologist and the surgeon who did my prostatectomy. She was dismissive of the surgeon who operated on me and told me I never should have had surgery.
And that I should have instead been referred to her for radiation based on my prostate-specific antigen (PSA) level. She said that anyone with a PSA level of 47 has no chance of a surgical cure. I’m not aware of any published studies that support her statement.
I told her that the surgeon had told me about a patient of his who had a preoperative PSA of 300 and ended up having a surgical cure. Her response was a snide “that’s anecdotal,” implying it wasn’t true. Then, I stopped talking and let her continue armchair quarterbacking my experience based on what we know now.
Arrogance is a trait that tends to run in doctors. I know this because I was pretty arrogant early in my medical career, but this physician wasn’t early in hers.
She reiterated her partner’s plan of recommending I start ADT immediately, followed by at least five weeks of radiation to the pelvis, regardless of what the Axumin scan showed.
She showed no real compassion regarding my concerns about the potential side effects. She even said that because women experience hot flashes as they go through menopause, most women will have no compassion for me if I complain about that. That left me trying to figure out what female menopause symptoms had to do with my concerns about the side effects of ADT.
She mentioned she had described my PSA to the insurance company as rising. I had only had one postoperative PSA drawn at that point, so I did not understand how a trend could have been established.
She also told me her clinic’s cost for the injectable radioisotope was $4,000. I’ve written elsewhere about how list prices in American medicine get set, and I’ll come back to that in another post. What stayed with me from that visit was not the money. It was that no one had yet asked me a single question about what I was afraid of.
She ended my appointment by advising me to stop worrying about the potential side effects of my treatment. That would have been good advice if she or her partner had compassionately discussed my concerns about the side effects. Neither did that, so I took it as advice meant to get me to close my mouth.
I left there seriously considering a second opinion with another radiation oncology group. Surely, other radiation oncologists in my area are compassionate and will listen to my concerns about the potential side effects of treatment.
I went home and started searching YouTube for academic lectures on the management of symptoms of ADT in men with prostate cancer. The best evidence I found was a randomized trial in which 12 weeks of resistance training three times a week reduced fatigue, improved quality of life, and increased muscular fitness in men on ADT.
Various medications can be used off-label to help reduce symptoms of hot flashes and fatigue. However, none of the physicians I have seen so far have mentioned any of them.
It took a week for my insurance company to decline my urologist’s request for the first ADT drug, and another week to approve the second ADT drug. I received a phone call from a pharmacy benefits manager company saying they would let me know when the drug was shipped to my urologist’s office.
The first radiation oncologist I met with assumed that all urologists keep ADT drugs in their office and instructed me to go over and get an injection of whichever one they had in the office. It doesn’t work like that.
Each insurance company has contractual agreements with different pharmaceutical companies, depending on which company offers them the best deal. Even then, the approval process for the drug they allow still takes approximately a week.
My urologist’s office scheduled the appointment for my first injection of Trelstar, a gonadotropin-releasing hormone (GnRH) agonist, which mimics the release of GnRH from the hypothalamus, secondarily affecting the release of other hormones from the pituitary, which finally inhibits the release of testosterone by the testicles.
Reluctantly, I went for my first injection, which was given with a large needle intramuscularly into my buttock. Initially, I didn’t have any side effects from the injection other than a sore butt. After about three weeks, my quality of life began to decline rapidly. We’ll save that for another post.
Mike, my husband, was with me the day I went to get the results of my Axumin scan and pulled into the radiation oncologist’s parking lot just after I did. It has been so important for me to have such a loving and supportive partner in this process. He has truly made all the difference, and I’m so incredibly thankful for him.
We were called back into the exam room and waited about fifteen minutes before the owner stuck her head in the door and asked me if I had repeated my PSA test since I last was there. I told her that I hadn’t, and she abruptly left.
When she returned, she politely introduced herself to Mike and told us that the scan “showed nothing definitively abnormal.” Why didn't she just say the scan was normal? She seemed perplexed that it was normal. I think that was because she thought that with a PSA of 4.8, my scan would show something.
Mike and I were both so relieved, and I shouted, “Yes!” After that, she rationalized the normal scan in the setting of an elevated post-operative PSA with an emphasis on the concept that there is still cancer in my body. So much for the momentary happiness about the negative scan.
She also tried to talk me into letting her staff insert an endorectal balloon with the planning scans and again each time I came in for radiation. She said it would help protect the delicate rectal tissues from excessive radiation during the eight weeks of treatment.
I had read the literature on the use of endorectal balloons for prostate cancer radiation, including for men who did and didn’t have a prostate. I wasn’t impressed with the statistical difference it made.
Regardless, with my history of bowel issues, it was not an option for me, and I told her that. She agreed to let me proceed with radiation therapy without the endorectal balloon. Before leaving the office, I scheduled the radiation planning scans.
The planning scans for radiation therapy involve getting a pelvic computed tomography (CT) scan one day and a pelvic magnetic resonance imaging (MRI) scan the next day. For both scans, you lie on a table with a full bladder while the machines scan you for about fifteen minutes. Those two tests were some of the easiest things I’ve done in this journey.
The next day, I emailed the radiation oncologist to let her know I’d done the scans and asked if we could start radiation therapy as soon as possible. She had previously told me that starting radiation the week of August 6th would be fine. The scans were done on Wednesday and Thursday, and the following Monday was August 6th.
I still felt uneasy about going with this radiation oncologist. She had a good reputation in the prostate cancer community. Her focus was on prostate cancer, and on paper, she seemed like the perfect fit, but my gut was telling me no.
I remembered how I felt when her colleague came into the room, red-faced, after being in the hall loudly discussing a treatment refusal with an insurance company. He suddenly became authoritarian with a smile on his face, but inside, I sensed he was seething. The bright red face was a dead giveaway, but so was his insistence on what I was going to do while at the same time being annoyed by my questions about the potential side effects of androgen deprivation. Strike 1!
Then came my visit with his partner and the clinic's owner. That visit didn’t start with, “I’m sorry you didn’t have a good experience on your first visit.” Instead, it began with, “Why did it take you so long to have a biopsy?” followed by, “You never should have had surgery.”
It felt like I was being punished for not bowing down to her partner and keeping my mouth shut. She spoke poorly about my surgeon and about my urologist's staff. She came across to me as insecure. Nothing she said about them sounded like concern for my care. It sounded like she wanted me to think less of them and more of her. Strike 2!
Then came the wait after the planning scans. One week passed, and then another, with no word from her office. Strike 3!
I called the other radiation oncologist’s office for an appointment. The radiation oncologist himself immediately called me back and offered an appointment the following morning. Because of my work schedule, I couldn’t see him then, but I was able to see him two days later.
This is a perfect example of why patients sometimes need second, third, and fourth opinions about their care. One review shows that cancer patients who trust their healthcare providers tend to have better communication, decreased patient fear, and better adherence to treatment plans.
In my next post, I will describe my experience with the radiation oncologist I chose for my treatment. That experience was unlike the other two and made the decision easy.