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CyberKnife and Castration

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My course of 25 radiation treatments started in June. First, my surgeon had to insert small gold pellets into my prostate to give the machine something to aim at. They also tattooed two small black dots on the skin at my hips which would allow them to accurately position the machine each time.

The CyberKnife machine was like something out of a Transformer movie, a science fiction robot that seemed eerily alive. After strapping me down securely — I would have to remain motionless except for breathing for almost an hour — the machine would come to life. The head-like camera and gun on the end of a mechanical jointed boom would first scan my body from toe to head, coming to a stop in front of my face, like it was staring at me for a few seconds. Then, for the next hour it would move about the room, stopping at 91 separate locations, shoot, and move on. There was no sound except for the electronic noise of the machine and occasionally some verbal commands from the technical staff outside through the speakers.

Five days a week I drove in to Boston from Leominster, an hour and a half each way depending on traffic. My radiologist, Dr. Aronovitz, was only half joking when he said that the drive every day was more of a threat to my life than the cancer. Isis insisted on driving me, at least initially, but as the process became routine we both felt better about me driving alone and her filling her time with more useful things. After all, she still needed to make a living and the move to Massachusetts had disrupted her professional life as well.

Radiation therapy does not kill the cancer or other cells immediately. It damages the DNA, so the cells cannot support themselves or reproduce and eventually die off. The process is gradual and takes two years. During the treatments I thought I could feel a little warming and inflammation deep in the pelvis, but it was so faint that I may have just imagined it. My radiologist said I would feel nothing during the treatments but wanted to keep a close eye out for any undesirable side effects like radiation burns or tissue necrosis.

I began to experience sciatic pain, which I blamed on the radiation.

In July after completing the treatment, I was feeling very weak, which seemed odd. My doctors had told me that I would, even though there was no surgery or chemotherapy. I was definitely at my weakest by August. I had lost a lot of weight and my energy was insufficient to either work or to continue with my favorite sport, Taekwondo. (Prior to therapy, I could teach three classes a night and several on Saturday. By August, I could not make it through even half an hour.)

The growing sciatic pain made it difficult to run or kick. Any exercise involving jerky motions or high impact sent sharp, electric pains shooting down my legs. My performance at the gym dropped alarmingly. Just a couple of months before, I had been able to do 25 pullups; now I could barely make six or seven.

Photo from thewrap.com

Castration

As far back as the early 1940s, cancer researcher Charles Huggins discovered that deprivation of testosterone slowed prostate cancer growth. If they administered testosterone, the cancers grew. The simple conclusion was that testosterone promotes prostate cancer growth. For his work, he was awarded the Nobel Prize in 1966.

Castration has been part of the treatment for prostate cancer ever since, though more recent studies have contradicted the link between testosterone and prostate cancer.

Abraham Morgentaler was one of the first to observe that the incidence of prostate cancer did not correspond to predictions relative to testosterone. Normal levels of testosterone in older men were associated with less cancer rather than more. In fact, Morgentaler’s clinic even has a cohort of patients with active prostate cancer who are also receiving testosterone, exactly the opposite of medical doctrine which has been in place for almost 60 years. These men aren’t doing any worse on the testosterone and statistics show they even do marginally better.

Everyone on my cancer team at Beth Israel,[1] even the most vocal advocates of testosterone deprivation, agreed that removing testosterone does not extend the patient’s life and it makes the patient more susceptible to a host of other serious medical problems like heart disease, obesity, diabetes, osteoporosis, sarcopenia, and depression. Still, Dr. Connors wanted to stop my testosterone injections at least until my PSA bottomed out in two years. I was making enough testosterone naturally to support healthy metabolism, so I wouldn’t miss it much. And at least he wasn’t pushing for me to take Lupron.

Chemical castration

Lupron is a drug that stops the production of testosterone and is a welcome alternative to surgical castration. Much of the research and development that eventually produced Lupron was done at Beth Israel. Dr. Steven Balk, who led much of the research, was on staff. I was worried that if I refused the Lupron, they might not take me as a patient. But they accepted me nevertheless.

Beth Israel is one of the leading prostate cancer centers in the world and I joined their patient support group, hoping to both benefit and contribute. There was a trove of expertise available and they meant well, but the support groups were usually dominated by the doctors talking to each other while the patients sat and listened. One doctor even gave a talk on how they were focusing more on listening to the patients to understand patients’ priorities. The doctors did all the talking while we patients sat quietly, unable to contribute. One man spent the whole hour in the back waving his hand, trying to ask a question. When they closed the discussion at the end of the hour, he stood up and shouted out his question anyway:

“I drove three hours to get here. I have a question. I was just diagnosed with prostrate cancer and my PSA, whatever that is, is 7. What should I do?” Then he sat down.

Dr. Balk, of Lupron fame, fielded the question, compassionately ignoring the patient’s mispronunciation of his own disease, and suggested the man read the research for himself and make his own decision. This poor fellow, with no background in science or medicine to understand even one of the thousands of pages of research on the subject, was overwhelmed. All he wanted was someone to tell him what to do. No one could do that, despite the collection of a dozen experts in the room.

Find an advocate

Cancer is overwhelming and every patient, if at all possible, should find an advocate to help him through the ordeal including looking over the bills, assist in managing the schedule of appointments, and advising him on the right course of therapy.

Odd as it sounds, there was no oncologist on my team. Of the six doctors involved — my primary care doctor, a radiologist, two surgeons, a urologist, and an age management physician — none were cancer specialists. Only Dr. Yu — a surgeon by training — knew anything about the metabolic management of cancer. The upside was that none of them cared whether I did anything with diet or blood sugar control, as long as I kept everyone informed. I stayed with the low glucose strategy by avoiding carbohydrates and engaging in intermittent fasting.

I’m sure my low glucose, weight loss and low testosterone all played a part in my increasing weakness, but even then, I never lost sexual function. Erection, ejaculation, and orgasm, which should have been the first to disappear, stayed strong and reliable. That could have only been thanks to the skill of my partner, who had many ideas that kept things going strong in that one area while every other area suffered as predicted.

How did she do it?

[1] https://www.bidmc.org/