She deserves her own post

My wife of over 15 years has been a rock beside me through this whole process. There is no where to start or begin to tell you how important she is through this process, she was ready to be my nurse post surgery, she is ready to support me in my decisions. She has traveled with me from treatment center to treatment center. She asks the good questions!

The speed of the medical community

Thursday August 29^th. Trying to get a Multiparametric MRI scheduled through my urologist, gave me six week wait time, then ten days before they will be able to discuss it, so two more months wait time, um yeah no.

Reached out to Emory, and they are waiting on a fax from my doctor and they will try to do the MRI next week.


After talking with Georgetown today, who limit prostate patients to Medicare/Tricare, I have made my decision to use Emory as my treatment center.

Emory Proton Therapy Center

August 27^th, off to Atlanta to view that facility. Wow, Lindy, Nancy and Charles were great. Charles arranged for the meeting at the facility. I was given a tour, and this facility just opened in December, so they have all the latest up to date equipment. They use pencil beam proton treatment, which controls the protons at the end with magnetic aperture (magnets are used during the entire runway for the protons) directing it to the different rooms.

After the tour, we were able to have a meeting with the director of the facility, one of the radiation oncologists, the head physicists and what I would call a controller, ie the guy who directs the protons for my specific treatment.


They gave a great presentation and diagrams of the difference between proton and IMRT photo treatments. Amazing.


Emory also uses formed fitted seat/bags to make sure you are properly lined up for treatment. If I choose Emory, I hope to ring the bell after my last treatment.

Hampton Proton Therapy Center

August 23^rd, off to Hampton today. Hampton was great. Got to see the entire facility, the Radiation oncologist gave me a diagnosis of T1N1M0 or low risk. He has had several with my diagnosis, stand up and say they will be back in a year. With my family history, though, it might be best to start sooner rather than later.



I will have an MRI. He explained the procedure, they would insert the SpaceOar gel inbetween my prostate and rectum (they have been using it for four years). This product helps block the radiation from disturbing my rectum. I will have four seeds/markers inserted into my prostate, they will be the crosshairs that will enable them to line up the proton gun the same before every treatment. And I’ll get three tiny dot tatoos, the nurse who was showing us around showed us hers, since she was instructing people to get them she got one to see if it hurt, and how big it is. If she hadn’t told me I would not have known she had one on her hand.


I need to drink X amount of water 30 minutes before procedure to move my bladder out of the way.  

Side affects will be irritated urethra (it gets sunburned by the radiation) 20% experience fatigue. Years later there could be rectal blood, but it is becoming more and more rare, and they are seeing it pop up with people on blood thinners.*


One of the nurses took us on a tour, showed us the room and the large brass fittings that will be customized for me. I was very happy with the facility, and the people I met.

words of wisdom: "Get friends to drive you to treatment, not because you are tired or sick, but because it will help pass the time and they will learn about awesome procedures or cures there are."

*I have no facts to support this claim, just general conversation with the Doctor.

Speak to people, listen, gather information

Wednesday the 21st of August.

A quote I came across today, “In summary, proton therapy is just as effective as photon (traditional) radiation therapy, but the question remains as to whether the increased cost of proton therapy is worth the anticipated lessening of side effects.” – breast360.org Radiation Therapy: Photons vs. Protons


Cool day, got to speak with Bob Marckini for 50 minutes. He gave me a few recommendations for questions. Is providing me more research information, and was just great. Sent a list of 150 patients who are willing to talk about their experience.


One suggestion was to make sure I get a second opinion on my pathology, that really determines what direction my treatment should go. If there is a discrepancy in my Pathology, send it to Epstein at Johns Hopkins, he is the expert on Prostate pathology.


That PSA increase velocity can be more important than what the value is.

Ultrasound biopsys is such old technology, there is newer MRI Multiparametric procedure is much more advanced. Helps you better pinpoint where to biopsy before you go in.


Words of wisdom, "Get treated and the best place for you, not what’s most convenient!"

With every peak, there comes a valley

Tuesday the 20^th I spoke to the nurse of a radiology oncologist at a local hospital, told her I was looking meet the doctor for another opinion, told her that I wanted to do Proton therapy, and she said, we don’t do that here, why would I want to do that, there isn’t any research on that procedure. I asked, what do you do there and she said radiation and surgery, I asked if it was IMRT, and she said yes.


She also asked if I had had an MRI yet, or bone scan on my pelvis, I said no, so I need to get those done, sooner rather than later. Bob’s book does insist that I do that. Anxiety definitely elevated today. As I spoke to her more I talked about the proton facilities I was going to visit, she was surprised there were those facilities, I told her there were 22 around the country, she was surprised, had no idea there were that many. (side note, there are more than 22 and more being built).


My wife and I also attended the end of the Surgery pre op class with some other couples. Listening to post op side affects is interesting. The two ladies were great, we were late, because of me. I swore the seminar started at 4:00, my wife said 3:00. She was right, I was wrong. It will happen again. The two ladies who gave the seminar stayed after and spoke with us, one was somewhat familiar with Proton therapy and seemed to dismiss it a little.

You can beat Prostate Cancer, And you don’t need surgery to do it, by Robert Marckini

You can beat Prostate Cancer, And you don’t need surgery to do it, by Robert Marckini. Buy this book, read this book, it will take you 2 to 3 hours. (Bob is working on an updated version). It will just open your eyes to get yourself the best care for you.

Sunday morning I woke up and the book was in my nightstand, almost calling my name, like the heart under the floor boards in tell tale heart. I spoke with my wife and said I need to read it, so I took it to the office at work, where there were no distractions.

The first third of the book brought back all my anxieties, it was awful, why would someone recommend this book, but I was given strict instructions, to read it page by page, chapter by chapter and call back after I had finished the book. Half way through the book I was seeing the light, I was ready to start the process. The second half of the book is informative, it helps you understand there may be a fight coming to get help (the book is over ten years old, so I think there is more acceptance of this procedure now than before) This is the point where you are thankful there are rich people willing to spend their own money on experimental procedures, so they can eventually become available to us, and health care providers will approve them.


Monday August 19th has been crazy. So far I have been in contact with Charles, my uncle, another uncle who is a retired radiologist, Bob Marckini, the author, and a physicist who help build the proton facility at Loma Linda (this is where Charles and Bob Marckini had their procedures done). I’m waiting to hear back from a radiologist from UVa who uses, IMRT radiation and a product called SpaceOAR (Organs at Risk) gel which helps protect the rectum from radiation, and through all my family’s relationship at Massey I have a connection there and waiting to hear back from them as well. Today could be the most optimistic I’ve been. I’m also waiting to hear back from a patient from the Hampton Proton Therapy Center, who’s son has kids in school with my kids.

The world keeps shrinking. Charles and I spoke and he will be happy to meet with me in Atlanta next week, along with my uncle and my wife to view the atlanta facility. There really is a brotherhood/fraternity.