PSMA PET scan at UCLA - 012

The reason I was so interested in undergoing a prostate-specific membrane antigen (PSMA) PET scan was that it is part one of a two-part system called theranostics. Theranostic systems include therapy and diagnostics. The original theranostic system uses radioactive iodine to treat hyperthyroidism and certain thryoid cancers.

In regards to prostate cancer theranostics, the diagnostic part is the PSMA PET scan. The therapeutic part, if the PSMA PET scan lights up, is called PSMA radioligand therapy (PRLT).

The PSMA PET scan detects a protein, also known as an antigen, on the prostate cancer cell surface. Not every prostate cancer cell expresses this antigen, but many do, including both castrate-sensitive (sensitive to androgen deprivation) and castrate-resistant cancers (resistant to androgen deprivation).

PRLT is a precision type of radiation where a radioisotope is injected into the bloodstream, which then locates and binds to the antigen on the prostate cancer’s cell surface. Once the radioisotope binds to the cell surface antigen, it releases a two-millimeter burst of radiation, which kills the tumor cell. It’s such a small burst of radiation that it tends to spare healthy tissue, unlike typical radiation therapy.

The term “prostate-specific membrane antigen” is a misnomer in that this antigen or protein is also found in other types of cancers and in healthy tissue such as the salivary glands and small intestine. So it is really not “prostate-specific.” Why someone had to name it that and make an already confusing subject more confusing, I do not know. Despite this antigen being found in healthy tissue, radiologists know how to read these scans to delineate antigen expression of tumor tissue from normal tissue.

To reiterate, I had already undergone a prostatectomy and eight weeks of radiation without a cure and am intolerant of androgen deprivation (testosterone lowering). This leaves few other options for treatment, none of which are considered curative. So I wanted to see if I was eligible for the therapeutic part of this theranostic system - PSMA radioligand therapy (PRLT).

There are caveats to PRLT, one of which the oncologist at MD Anderson Houston had mentioned. Because prostate cancer is so heterogenous, meaning tumor types vary from person to person, and even within the same individual, none or only some of the prostate cancer cells may express this antigen.

If none of the tumor cells express this antigen, the PSMA PET scan will not light up. Even if the PSMA PET scan indicates prostate tumor cells are expressing the antigen, it is theorized you’ll still miss killing some of the tumor cells with PRLT. Because of prostate cancer’s heterogeneity, there are likely other tumor cells in the body not expressing the antigen and thus won’t be harmed.

But, you don’t know that for sure and there is always the potential for someone to be an exquisite responder to PRLT. In addition, there is data coming out of Germany from Dr. Richard Baum, that shows you can use PRLT like maintenance therapy giving up to eleven courses in some men. Despite eleven courses of therapy, Dr. Baum finds there is relatively little collateral damage to healthy tissue, especially in comparison to traditional radiation therapy.

The downside of getting a PSMA PET scan for me was that because PRLT is not FDA approved in the U.S. outside of clinical trials, I would have to go to Germany for treatment. The reason I was not eligible for any of the U.S. clinical trials using PRLT is that they all require you to be castrate-resistant. Meaning you must have been on androgen deprivation long enough for the prostate cancer to become resistant to androgen deprivation.

Because of this, there are physicians and organizations inside and outside the U.S. that assist men in going to Europe for PRLT. If my PSMA PET scan was abnormal, my plan was to go to Germany and receive PRLT from Dr. Richard Baum, one of the world’s premier experts in this therapy for prostate cancer.

After my appointment at MD Anderson Houston, it took a couple of months to get an appointment for a PSMA PET scan at the “University of California, Los Angeles (UCLA).” In 2019, the PSMA PET scan wasn’t yet FDA approved and was only being used in prostate cancer clinical studies in the U.S. This was despite the PSMA PET scan being used in Germany for ten years and in Australia for five years.

Just prior to starting androgen deprivation therapy (ADT) in June 2018, I had undergone an Axumin PET scan, which showed no tumor activity despite a PSA level of 4.8. The Axumin PET measures uptake of a synthetic amino acid by prostate tumor cells. After that, I had two injections of ADT and underwent eight weeks of radiation therapy focused on the prostate bed and pelvic lymph nodes.

A couple of months after completing radiation, my January 2019 PSA level had dropped to 0.9. It then began to steadily rise and my PSA level just prior to getting my PSMA PET scan in September 2019 was 3.3. Keep in mind that my PSA level should be zero since I no longer have a prostate.

I decided to fly to Los Angeles by myself for a quick test and come home. At the time, the only direct flight was a JetBlue flight out of Orlando. So I drove to Orlando, caught my flight, took a taxi to my hotel near the UCLA campus, and the following morning took another taxi to UCLA’s imaging center.

I arrived at the imaging center early in the morning, checked in, and paid $2647.91 with a credit card since it was part of a research study. I then drank a liter of dye over about an hour, got into the CT scanner, and was injected with a radioactive tracer drug. The PSMA PET scan began and after a while, I was asked to get up and empty my bladder. I came back for more images and then we were done. Fairly quick and easy.

While I was at the UCLA imaging center, something very interesting happened. One of the employees involved with my care came up to me and said, “You’re a doctor, right?” I said, “Yes.” He then told me that he and I had the same birthday, he had a rising PSA, and he has a brother who has prostate cancer. He told me he had recently undergone a prostate biopsy of twelve cores and his doctor told him there was no cancer.

Alarms started going off in my head! Let’s break down this synchronicity. Here was yet another meaningful coincidence associated with my birthday, September 25th. I discussed the first synchronicity regarding my birthdate in the very first newsletter. He had a rising PSA and a brother with prostate cancer. I also have a brother who had prostate cancer. And this man would just so happen to be assisting me in my workup of advanced prostate cancer.

We didn’t have very much time to talk, but I felt compelled to mention a few things to him based on this powerful synchronicity. The very first thing that popped into my mind was that this gentleman has prostate cancer, but I did not tell him that. I quickly mentioned his increased risk for prostate cancer because his brother also has prostate cancer. We talked about the fact that he is young, has a rising PSA with no symptoms of prostatitis, and has no history of an enlarged prostate, both of which can elevate PSA levels.

I mentioned the importance of monitoring his PSA doubling time and for him to consider getting a second opinion from another urologist. I only mentioned that because he was obviously wanting another opinion from a doctor because he was talking to me about it.

I told him that if his PSA continues to rise, he should talk to his doctor about specialized imaging such as a multi-parametric MRI scan. And finally, I reiterated his increased risk for prostate cancer with a rising PSA and recommended he talk to his urologist about a saturation biopsy. He thanked me for my input and then he was gone.

That man came across my path for a reason. I was alerted to the importance of our conversation given our common birthday and the fact that I had already had a powerful synchronicity related to my birthday in this prostate cancer journey. I said a little prayer of thanks for this synchronicity and prayed he would make decisions that would help prevent him from being diagnosed with advanced prostate cancer.

I left Los Angeles on Friday afternoon and Monday morning I received the results of my PSMA PET scan in my Gmail inbox. Because it was done as part of a research study, they were emailing patients with their results. I was very nervous about opening the report and waited for a couple of hours before my curiosity outweighed my fear. I opened it and read the entire report in less than thirty seconds. It ended with

I was very relieved. That was my second negative PET scan since my PSA had started rising after radiation. So this suggested I had micrometastases in my body that were too small for conventional imaging to detect and none of the tumor cells were expressing PSMA. I wouldn’t be going to Germany for PRLT, which would have cost me $20,000.00, not including airfare.

So my search for answers and options continues. If there’s anything this journey has taught me, it’s patience. Things will unfold as they are supposed to. The Divine has made it very clear I am being supported from a spiritual standpoint. I just have to trust that things will happen as they are supposed to.

In the next newsletter, my father who has passed away, pays me a visit to remind me about a Divine power - Grace.