@colleenyoung

Colleen:

You are correct that my current treatment path is Eligard, which I started on 2024-04-25, and Proton which will start about 2024-06-01. I consider this Phase 1 of my treatment path.

I do not know who is on my care team other than my Radiation Oncologist and two Urologists, one of whom I have seen and one I will see on Monday. Perhaps that is the standard/default care team for prostate cancer together with specialists like pathologists. The Radiation Oncologist deals with Directed Therapies and the Urologist with Systemic Therapies. A Medical Oncologist, if present at all, is a supernumerary.

I will commute from from home in Eugene OR to Phoenix on Sunday for two appointments on Monday and four on Tuesday, all preparatory for Proton. One of the appointments on Monday will be with a Urologist and two on Tuesday with my Radiation Oncologist. I will certainly ask about Phase 2 if there is time since I presume the focus of these appointments are the procedures, carbon marker implantation on Monday and CT Simulation Therapy followed MR Prostate Imaging on Tuesday.

The PCRI videos by Dr. Eugene Kwon and Dr. Mark Scholz have greatly influenced my desired Path 2 treatment path. I have advanced prostate cancer and Dr. Kwon's overall message is advanced prostate cancer requires aggressive treatment, such as 2nd line hormone therapy and 6 cycles of chemotherapy in addition to continuing Eligard. The other message is the absolute need for at PSA testing and PET/CT imaging at regular intervals to asses the effectiveness of the therapy and, if possible, genetic testing. If genetic testing is not part of the Mayo protocol I will self-finance it. Since I am not a doctor of medicine, I am certainly open to alternative treatment paths by my care team at Mayo.

As a comment I have not read where anyone is simultaneously on radiation and chemo. This raises the question of sequencing. Should radiation proceed chemo or vice-versa? And if so, what are the factors in deciding which should be first. Perhaps the overriding factor is operational, the availability of slots for Proton. This decision could be conveyed to the patient in a few sentences or a few minutes with verbal communication. This is an added burden to the care team but an inevitable consequence of knowledge patients who want an optimal treatment path.

Being able to message your Doctors seems to be a privilege given to few at Mayo PHX. With regrets I called the PA of my Radiation Oncologist asking her to relay a question to the Doctor. With regrets because I know the medical personnel are going flat out and the question did not have telephone urgency. She gave me a number to call for requesting that my Radiation Oncologist be added to people I can message. The number was for Tech Support who said no can do. No big deal since the PA said all messages to the Doctor go through her anyway. Message triage I presume. I severely limit my communication because it is just one more task for the medical personnel. My observation is that, in general, at Mayo PHX for a patient to message someone he/she has first to be messaged by that person.

Finally, I like to think of my treatment path as my treatment safari. Safari has the connotation an adventure into the dangerous unknown. However, amusingly, safari is a Swahili word that simply means journey so you could take a safari to the grocery store.

KR, Rick