Follow Up With My Radiation Oncologist - 045

A couple of weeks ago, I had a flare of low back discomfort associated with a pressure-like sensation in my left groin. This episode was similar to the ones in the past but much more intense and lasted longer. Even though I'd had an MRI of my lumbar spine six months ago and a PET CT scan five months ago, neither showing evidence of malignancy, my mind went to a dark place.

Because my pelvic discomfort was more intense and lasted longer, I began to ruminate on it excessively. There's something about unrelenting body pain and discomfort, especially when you are trying to sleep, that hijacks the logical mind.

It didn't help that my PSA tumor marker was 197 two months ago. As I discussed in my last newsletter, that PSA test result set me back emotionally. I'm pretty sure the emotional setback devolved into a low-grade depression because I was experiencing prolonged sadness, a general lack of interest in things I used to enjoy, and apathy.

---

Unrelenting pressure

So it was in that setting that I was trying to fall asleep and experiencing the unrelenting pressure in my pelvis when my thoughts spiraled. It honestly took less than a minute for my mind to convince me that I had a tumor growing in my pelvis, which wouldn't be treatable with radiation.

I felt my heart racing, and sheer terror shot through me. It was a horrible feeling. I moved over in bed and leaned my head against my husband's back. He turned over and asked me what was wrong. I said, "I'm scared." He didn't even ask what I was afraid of. He knew it was about cancer even though I hadn't told him about the pelvic pressure I'd been experiencing.

I felt like a child who had climbed into bed with his parents because he'd had a nightmare. That's how vulnerable I felt. He rubbed my back until I could "talk myself off the ledge" and get drowsy. I am still trying to figure out how I'd do this cancer journey without Mike.

The next day, I scheduled a massage, which was extremely helpful in releasing the muscle tension in my back and pelvis. I also did some intense stretching in the gym, and within three days, the back discomfort and pelvic pressure were gone.

---

Pulling out of a spiral

Even though I'm a student of the mind and emotions, it never ceases to amaze me how powerful they can be. One minute, you are dying a horrible death, and the next minute, you are fine.

Thankfully, I'm pulling out of the depression after the massage, a good cry, and Mike upping his caretaking. I hadn't been that depressed since I was on androgen deprivation therapy, and I had forgotten how pessimistic it makes you.

When I forwarded my April PSA results to my radiation oncologist, I asked for a reprieve until June. The time was up, so I scheduled an appointment. I had initially planned to have another PET CT scan in June, but during the depressive phase, I changed my mind.

If a PSA result was going to throw me for a loop, what would an abnormal PET scan do? Now that I'm asymptomatic, what will we do with the results anyway? I'm not going on androgen deprivation therapy again.

---

Follow up with my radiation oncologist

I left work early and drove to the radiation oncologist's office. It's strange to think I've been going there for over five years, but what's even stranger is that I don't mind going. They feel like an extended family to me.

It's a beautiful facility. Everyone is well-trained, kind, and professional. My favorite nurse practitioner and doctors are also there. I feel very blessed to have them taking care of me.

Shortly after I'm seated in the room, Katrina, my favorite nurse practitioner, greets me in her usual loving way. She didn't ask me why I hadn't done the PET CT scan she had ordered. She just asked me how I was doing.

I told her I wanted to check in with her and Dr. Stroud since my PSA had risen. And since I was asymptomatic, I wanted to hold off on getting another PET scan until I returned from Europe in September.

---

A new strategy

I explained how I had scheduled a consult with a clinic in Switzerland in late September and was to undergo a treatment called INUSpheresis. And I'd schedule a PET CT scan appointment as soon as I returned.

Katrina asked me questions about how it works. I explained it and she seemed genuinely interested. Before Dr. Stroud came into the room, I asked Katrina what was being written in my medical records about me declining to go back on androgen deprivation therapy.

She pulled up my last visit, turned the screen to show me, and I was pleasantly surprised to see they had written,

---

"We honor his choices in his journey."

---

I felt very touched by that incredibly compassionate statement. I know a few doctors, including my younger self, who would probably have written, "He is non-compliant and declining the recommended treatment." The old "cover your ass" (CYA) statement is based on the fear of being sued.

Who writes a compassionate statement like that in a medical record? A healthcare provider who is confident, compassionate, and sincerely cares for their patient. It only confirmed why I feel the way I do about them.

---

If you are undergoing monitoring and treatment for prostate cancer or any health condition, I hope you have providers like mine.

---

Dr. Stroud entered the room with his usual laid-back and kind personality. We discussed the plans for treatment in Switzerland, followed by another PET scan at the beginning of October. He was okay with everything and reminded us,

---

“We are treating the patient, not the numbers.”

---

Reassurance

I asked him if I had already received the maximum amount of radiation to my pelvis should something pop up there. He said, "Absolutely not." If necessary, he could use precision-focused radiation like stereotactic body radiation therapy (SBRT) or proton therapy, depending on the situation.

---

INUSpheresis therapy

INUSpheresis therapy offered in Europe and the United Arab Emirates (UAE) is for blood plasma purification and removes pathogens and environmental toxins from the body. It strengthens the immune system by relieving the body of harmful substances that can burden the immune system.

According to their website, INUSpheresis therapy runs your blood through a specialized filter that removes environmental toxins, autoantibodies, pathogenic metabolic end products, inflammatory messenger substances, and pathogenic proteins.

INUSpheresis removes toxins and stimulates microcirculation so that the immune system functions better. It also acts as an anti-inflammatory.

My friend and physician, Dr. Daniel Kessler, knows the clinic's director in Switzerland and recommended that I consult with him. It feels right after reading about and watching a video of what they do.

Here is a link to a video about this clinic’s fascinating approach to treating chronic diseases. I’m starting with INUSpheresis, but I may also try some of their other therapies.

---

Hopeful

This new strategy gives me hope, which is one of the most important ways of thinking when you're striving to be well. My depressive state has lifted, and I feel hopeful again.

Whew! What a ride.

Until the next newsletter, stay healthy.

And much love,

Keith