Things Aren't Always What They Seem - 009
I settled into a regular schedule of driving to the radiation center for treatment every day after work. Surprisingly, I felt a sense of comfort every time I walked into that clinic. Part of that was because every single person in that center was incredibly kind and compassionate. The other part was that I was actively doing something powerful to help rid this cancer from my body.
My radiation oncologist has created a truly state-of-the-art radiation oncology practice in Jacksonville, Florida. It is newly remodeled, gorgeous, and filled with beautiful art and wonderful people. I feel it is a direct reflection of the type of person and physician he is - sophisticated and compassionate. In addition, his center is one of the few proton beam therapy centers in the southeastern United States.
Unfortunately, approximately six weeks into my radiation therapy, I developed severe bladder spasms and urinary frequency. That is not good to have when you are undergoing pelvic radiation because you need to hold a full bladder of urine during treatment to help maintain a consistent radiation exposure field. We all attributed my symptoms to bladder irritation from the radiation, which would have been unusual at that point in the therapy.
The spasms became so painful that I reluctantly decided to stop radiation with one week left. I thought if I could just take a break until things calmed down, then I could resume and finish the entire eight weeks. About a week after I prematurely stopped radiation, I passed a six-millimeter kidney stone and the symptoms resided. I had experienced a kidney stone about twenty years prior, so this was an old friend returning to disrupt my radiation therapy. Thankfully, I was able to resume radiation and complete the final week of radiation after taking a two-week break.
My radiation oncologist asked to see me back in a month for the first post-radiation PSA. This would have been in the month of December and I really didn’t want to be stressing over the results of yet another PSA test during the holidays. I call the emotional tension waiting on the results of the next PSA level, “PSAnxiety,” and it’s quite unsettling. I asked if he wouldn’t mind if we waited until after the holidays and he agreed.
On January 14, 2019, my PSA results came back at 0.9. While I would have preferred zero, my radiation oncologist was pretty happy with this response because it had dropped by more than half from the pre-radiation level. I was also surprised when he told me the PSA level could continue to drop over the next twelve months. So, while I wasn’t ecstatic about the results, I remained quite hopeful.
Ironically, I was even a little relieved in a weird way that my PSA wasn’t zero. This is because one of my worst fears at that time was that my post-radiation PSA wouldn’t be zero. My fear came true and I didn’t have an emotional melt-down. The cancer journey has all these intermittent trials you go through, and when you come through one of them pretty unscathed emotionally, it’s a relief. I was also hopeful based on the concept my PSA could continue to drop over the next year and settled into a period of hopeful waiting over the next four months until the PSA was repeated.
The cancer journey also creates these little time periods of what I consider a reprieve. Periods where you can stop focusing on such things as getting to the treatment center every day after work for radiation. As long as you are capable of keeping your mind off cancer and the associated fear during these periods, these times of reprieve can be awesome. I’m pretty much able to stop my mind from focusing on cancer and the fear during these times because of all the mindfulness and meditation I’ve done over the past ten years.
Practicing mindfulness and meditation has helped me create new neuronal pathways of peace and trust via hope for the future. Some people who can’t keep their minds off of the cancer stressors and fears may require antidepressants and sadly, some people will commit suicide. Thankfully, most quality cancer treatment centers offer resources to help their patients deal with the emotional stressors associated with having cancer.
I returned for my next PSA blood test on May 6, 2019. When I got a phone call from my radiation oncologist’s office a few days later, my heart sank. He had always waited for me to come back into the office to give me the results. In a worried tone, he told me over the phone that my PSA had increased to 1.72. Not only is the PSA going in the wrong direction, but it was doing it at a pretty rapid pace. In some men with prostate cancer, it can take years for a PSA to increase by 0.82 points. Mine had done it in less than four months.
PSA doubling time, the time it takes for a PSA level to double, is used as a marker for prostate cancer aggressiveness. Multiple studies have shown that for men with biochemical recurrence (an elevated PSA after definitive therapy), the PSA doubling time is an independent predictor of long-term survival, and not in a good way. Oncologists consider a PSA doubling time less than three months a seriously poor prognostic marker because overall survival significantly drops and your chances for metastatic disease, if not already present, start to increase.
In addition, a definition of treatment failure following radiation is an increase of 2 ng/ml over the PSA nadir, or low point, at any time. I wasn’t there yet, but the following PSA level on May 6, 2019, was 2.4 - very concerning with a 0.68 rise in one month. On July 17, 2019, my PSA was 3.0, fulfilling the definition of treatment failure with three consecutive increases plus an increase of 2.1 over nadir. Despite these consecutive increases in PSA, I focused on the positives, the doubling time had slowed a bit and I had no symptoms of metastases.
My radiation oncologist suggested I get back on ADT and I reminded him of the terrible side effects I experienced on that type of therapy. He also suggested I get an Axumin PET scan, and I reminded him that I had a normal Axumin scan when my PSA was 4.8, so I wasn’t sure if it would provide any helpful information at this point with a PSA of only 1.72. I had been thinking about seeing the physicians at “Baptist MD Anderson Cancer Center” in Jacksonville for a second opinion, and he agreed.
I scheduled an appointment with a urologist at MD Anderson Jacksonville. I had all of my medical records sent there prior to my appointment so he would be completely familiar with my case. My husband and I met with him on May 6, 2019, in a very beautiful facility that is touted as a joint venture between “Baptist Medical Center Jacksonville” and Houston’s “MD Anderson Cancer Center.” I’m thinking, “Wow, I have access to MD Anderson quality cancer care in my own backyard!” It turns out that isn’t the case and I’ll describe why in another newsletter.
The urologist walked into the room with his nurse, shook our hands, and asked me to explain what I knew about my condition. I briefly explained the chronology of events relating to my condition. I also told him that based on the rising PSA, it’s considered that I have high-risk prostate cancer and I potentially have a poor prognosis. I explained in vivid detail how ADT made me have such severe depression and sleep deprivation, that I was more afraid of resuming ADT than I was afraid of dying.
He then said,
“Most men don’t die of prostate cancer, but in your case, it’s incurable, and it’s going to kill you.”
I was thinking, “Did this kind-appearing doctor really just say that? Did he say those words because I’m a physician and he thought he could be frank with me?” In my twenty-seven years as a physician, I never told a patient that something was going to “kill” them.
This physician clearly doesn’t understand the nocebo effect, which can cause a detrimental decline in someone’s condition because of the negative words used by a healthcare practitioner. I just pretended he didn’t say that and kept the conversation going, but it was at that point, I knew he was not going to continue to be my doctor.
I told him about all of the research being done with advanced prostate cancer, including immunotherapy and a specialized injectable radiation therapy called prostate-specific membrane antigen (PSMA) radioligand therapy. Germany is about ten years ahead of the U.S. and Australia is about five years ahead of the U.S. regarding treating prostate cancer with PSMA radioligand therapy. In fact, many U.S. men have been going to Germany and Australia for this very promising therapy.
The reason I was interested in potential treatment with immunotherapy and PSMA radioligand therapy is that they represent options for treating prostate cancer other than with ADT. The problem is that in the U.S., immunotherapy is only available for men with advanced prostate cancer who are taking ADT drugs, and PSMA radioligand therapy hasn’t been approved by the U.S. Food and Drug Administration (FDA) for use in the U.S. I’d either have to enter a clinical trial for PSMA radioligand therapy or go to Germany for treatment.
He told me I wasn’t a candidate for any of those clinical trials because I was considered castrate-sensitive, meaning I hadn’t taken ADT long enough for it to mutate my tumor to the point where it became resistant to ADT. He also said those types of clinical trials require you to be on some type of ADT.
I then handed him a description of a clinical trial currently recruiting men with prostate cancer who have DNA repair mutations either in their germline (inherited) or tumor (somatic). It’s a clinical trial involving a drug called rucaparib, a pharmaceutical drug targeting the DNA repair enzyme poly-ADP ribose polymerase-1 (PARP-1). Because the drug inhibits a specific enzyme that repairs the DNA of the tumor, it’s called a PARP inhibitor.
At that time, this was the only immunotherapy clinical trial in the U.S. that was open to men with advanced prostate cancer not taking ADT drugs. All of the other immunotherapy clinical trials required the patient to be on at least one ADT drug. So you can see why I was so interested in seeing if I was eligible for it. But my tumor tissue from my surgery would have to be scanned for specific DNA mutations first.
As he was reaching for the paper, he was saying, “Oh you’d have to be on androgen deprivation for that trial.” Then as he read it, a surprised look appeared on his face and he changed his tune, acknowledging I was correct. So, I asked him if they would order a genetic profile of my tumor to see if I was a candidate for this clinical trial.
He didn’t answer that question, but instead said, “You’ve obviously done your homework and I’d like you to schedule an appointment with Dr. (Oncologist #1), our smartest physician here.” So, obviously, this doctor felt like he was in over his head with me and wanted to punt to their lead medical oncologist. He even apologized, saying that he hoped I didn’t feel like I had wasted my time meeting with him. I appreciated his sincerity but I didn’t appreciate him dropping the nocebo bomb on me.
He also told me that he would present my case at a tumor board. A tumor board is a group of doctors and other healthcare providers that specialize in cancer treatment and meet to plan the best possible treatment for a patient given the unique aspects of their case. In my case, the unique aspect was that I could not tolerate androgen deprivation, the lowering of my testosterone level, which is the primary treatment for advanced prostate cancer. I sincerely thanked him for offering to present my case at their tumor board.
But then despite me telling him earlier that I was more afraid of resuming ADT than I was of dying, he suggested I start taking a drug called Casodex (bicalutamide), which is a testosterone blocker. It’s basically an oral form of androgen deprivation therapy. He ordered a PSA and testosterone level and asked me to meet with their oncologist in one month. He also said he would call in the Casodex prescription to my pharmacy.
We shook hands and my husband and I went downstairs to the lab area so I could get my blood drawn. My husband, Mike, said as we were waiting for the lab draw, “You were making him squirm.” That was not my intention. I was interviewing him to see if he was an innovative physician who thinks out of the box and would be willing to help an advanced prostate cancer patient who is unable to tolerate ADT. If I knew more about the research and clinical trials being done on advanced prostate cancer than he did, that’s not my fault. I had the labs drawn and we went home.
About two hours later, I received a call from this urologist’s medical assistant informing me in a worried tone that my PSA had risen even higher to 2.4, and that I should immediately begin the Casodex. For the first time, I didn’t have a surge of fear when she read out my PSA number. Maybe the extinction principle was finally kicking in. That occurs when you are exposed to something fearful, enough times until it no longer triggers a fear response.
I briefly thought about taking the Casodex and then reminded myself of the side effects I’d experienced and how these types of drugs mutate prostate cancer. One of the mutations turns Casodex from a testosterone receptor blocker into a testosterone receptor promoter. Meaning the drug starts to promote prostate cancer growth! In addition, a common side effect of Casodex is gynecomastia - man boobs. I thought, “There’s got to be a better way.” I thanked her, hung up the phone, and never picked up the drug from the pharmacy.
I continued getting mistletoe extract injections twice a week with my integrative physician and always looked forward to my conversations with her. She is board-certified in Internal Medicine and a diplomate of the American Board of Integrative and Holistic Medicine. She did her medical training in Germany and is an anthroposophic medical doctor.
Anthroposophic medicine’s philosophy is that optimal health depends on a balanced relationship between the physical body, the life force of the body, the spiritual part of us, and the ego. She is kind, compassionate, intuitive, and always able to tap into and successfully counsel me on any emotional issues I might be dealing with that day. I always left her office feeling relaxed and balanced. I’m very thankful for her compassionate care.
In the next newsletter, I describe my meeting with the “smartest doctor” at “Baptist MD Anderson Cancer Center” in Jacksonville, and I’m pleasantly surprised.