How Not to Treat Patients - 006
Everything still hadn’t fully sunken in when I met with the first radiation oncologist a few days later. I walked into this new facility and sat in the waiting room. I looked around and saw that there were free sodas, snack bars, and candy bars for patients in the waiting room. At first, I can’t believe it. Oncologists giving their cancer patients free concentrated sugar? Surely they have read the studies that show sugar feeds cancer. After all, one of the scans they use to detect tumors measures the rapid uptake of glucose by cancer cells because of their increased metabolic need for energy. My mind wants to go to a conspiracy theory but I resist. Stay focused Keith. This is going to be an important conversation.
I know I want to discuss my concerns about androgen deprivation therapy (ADT) with the radiation oncologist because I’m less concerned about the radiation side effects. So, when the radiation oncologist walks into the room, it’s shortly after introductions that I tell him my concerns. I immediately sense a shift in his initially kind demeanor. It’s subtle, but there’s a definite shift. 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 tells me he is going to be “paternalistic” with me, which was his way of saying he was going to tell me what he thinks I should do regardless of what I think. I sensed it wasn’t going to go well from that point on but then it suddenly got worse.
There was a loud knock on the door and 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 controlled anger. He returns to the exam room red-faced and aggravated. The negative energy in the room shifted into high gear. I gave up hope for a fruitful conversation at that point.
He told me the insurance company doctor told him he would never okay the request for the other patient and had wanted to tell him personally. Would he have told another patient that if they weren’t a physician? 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 me how I felt or about my concerns. 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 ADT and radiation are what I need. I wasn’t sure if he was taking a jab at me in an attempt to intimidate me into shutting up. My heart sank. This guy potentially has my life in his hands and I don’t resonate at all with him. That’s not a good combination.
At that point, he began to tell me what the treatment plan would be. 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 the recurrence of prostate cancer. 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 for 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?” I mean 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 just 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 all the way home and for the next two hours after I got home. I mean I really cried where your body starts shaking. I had let him beat me down to an emotional mess. He had taken away any sense of control I might have in this situation. Studies in cancer patients show that those who have some sense of control in the management of their disease do better.
Two of my close friends are friends with the physician owner of that clinic and asked me how my appointment went. I had originally 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 out our conversation by asking how my first appointment with her colleague went or even apologizing for my bad experience. In fact, 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 by my urologist and the surgeon who did my prostatectomy. She told me that the surgeon who operated on me will operate on anyone with good insurance and that I never should have had surgery. 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. By the way, there are no published studies that prove 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,” as if to imply it wasn’t true. At that point, 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 on in my medical career, but this physician wasn’t early in her career.
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, that 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 personal concerns about the side effects of ADT.
She said she had told my insurance company that I had a rising postoperative PSA, which wasn’t true, to justify the scan her partner had ordered. I had only had one postoperative PSA level drawn; therefore, “rising” wasn’t established.
She told me her clinic’s cost for the injectable radioisotope for the scan is $4000, so I’m assuming they bill the insurance company about twice that. I also know some medical doctors “game the system” to get what they want. In a later newsletter, I break down, in explicit detail, how a health clinic in Los Angeles not only “gamed the system” to get more money from my insurance company, but sent me a PowerPoint slide on how it all works.
She ended my appointment by giving me the following advice, “Stop worrying about potential side effects of your treatment.” That would have been good advice if either she or her partner had compassionately discussed my concerns about the side effects. Neither did that, so I considered that advice was given to get me to shut up. I left there seriously considering a second opinion with another radiation oncology group. Surely there are other radiation oncologists in my area who are compassionate and who will listen to my concerns about 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 advice I found was that studies show regular exercise significantly reduces symptoms of ADT and that diaphragmatic breathing helps reduce the intensity and frequency of hot flashes caused by ADT. There are also various medications that can be used “off-label” to potentially help reduce symptoms of hot flashes and fatigue. None of the physicians I had seen thus far had mentioned any of those things.
It took a week for my insurance company to decline my urologist’s request for the first ADT drug and another week for my insurance company 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 had instructed me to just go over and get an injection of whichever one they had in the office. It doesn’t work like that. Each insurance company has agreements in place with different pharmaceutical companies depending on which pharmaceutical company cuts them the best deal. Even then, the approval for the drug they allow still has to go through approximately a week-long approval process.
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 is given with a large needle intramuscularly into the 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 rapidly decline. But we’ll save that for another newsletter.
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. It truly has made all the difference and I thank God regularly 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 was there last. I told her that I hadn’t and she abruptly left.
When she did return, she politely introduced herself to Mike and then told us that the scan showed “nothing that was definitively abnormal.” Why not just say that the scan was normal? She seemed to be perplexed that it was normal. I think that was because she thought that with a PSA of 4.8, surely my scan would show something.
Mike and I were both so relieved and I let out a loud “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 definitely still cancer in my body. So much for the momentary happiness about the negative scan. She also tried to talk me into letting them 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 difference it made statistically. Regardless, with my history of irritable bowel syndrome, it was definitely not an option for me and I told her that. She agreed to let me proceed with radiation therapy without the endorectal balloon. Just before leaving the office, I scheduled the planning scans for the radiation.
The planning scans for radiation therapy involve getting a pelvic computed tomography (CT) scan one day followed by a pelvic magnetic resonance imaging (MRI) scan the next day. With both scans, you just lay on a table with a full bladder while you are scanned by the machines for about fifteen minutes. Those two tests were some of the easier things I’ve done in this journey. I emailed the radiation oncologist the next day to let her know I’d done the scans and asked if we could get started on the 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 a Wednesday and Thursday with the following Monday being August 6th.
I still felt uneasy about going with this radiation oncologist. She had a big new office and a good reputation in the prostate cancer community based on the statistics she posted on her website. Her focus was on prostate cancer, and on paper, 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. And how he suddenly became an authoritarian with a smile on his face, but inside I sensed he was seething. The bright red face was a dead give-away, 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 owner of the clinic. That visit didn’t start with “I’m sorry you didn’t have a good experience on your first visit.” 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 then spoke poorly about my surgeon and the staff of my urologist. She came across as very insecure and needed to denigrate the decisions of other professionals to make herself seem more intelligent. Strike 2!
Then came the wait after the planning scans. One week passed, and then another with no word from her office. Strike 3! That’s when I called the other radiation oncologist’s office for an appointment. That radiation oncologist immediately called me back, in person, and offered an appointment the following morning. I couldn’t see him then because of my work schedule but was able to see him two days later.
In the next newsletter, I describe my experience with the radiation oncologist I decided to go with for my treatment. That experience couldn’t have been more different than the other two and made for a very easy decision.
This is a perfect example of why it’s important for patients to get second, third, and even fourth opinions regarding their care. Studies show if you resonate with your healthcare provider, you tend to have a better outcome.