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!
I'm just a patient, who realized there are other options and you should investigate them.
Friday, August 30, 2019
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 29th. 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 27th, 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 23rd, 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 20th 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.
Ch ch changes?
I did reach out to the Hampton Roads proton center just after noon, told them I was scheduled for a radical prostectamy Sept 3rd. And that made the receptionist jump. She said someone will definitely get back with me Monday, if not later that Friday. Well someone called, set me up Friday afternoon and said a scheduler would call as well, and an hour later the scheduler called. I had an appointment for next Friday to learn more.
So yes, Friday night I took Xanax, laid on the couch for an hour or so, then went up to bed at 9:00 (one thing I have learn over the last two years from my best friend is how important sleep is, to letting your body fight anything. You need 8 hours period, don’t believe the hype that you can get away with less) I woke up the next morning actually feeling better. I was off to the golf course, side note, had an awesome time with my friends, had an eagle, and four birdies, shot 70 and lost money… yep crazy. So when I got home, there at the front door was the book, 28 hours after speaking to Charles there it was, this man was serious. I hid the book. I had just played some awesome golf and was in a good mood for the first time in weeks.
STOP!
Friday morning August 16th my uncle calls, says he has an acquaintance of his wife, Charles. (his wife is a fundraiser) My uncle lives in Atlanta, and a few years earlier I told him he missed most of my life, I’m sad I made that comment, I don’t remember making it, but it stuck with him. He had his reasons, and I completely understand his reasons. So I don’t blame him. So he calls, and when you go through stuff like this everyone knows somebody/has a friend who has been through this and they know better. My uncle says you need to call Charles, and when you are done talking you need to call me back. I missed 35 years of your life, I won’t miss anymore, I am with you. If you don’t call him I am getting on a plane and flying up there and I will drive you down to Hampton to see the doctors myself. Call him when you hang up, and when you are done call me back.
I was freaking out, it was like I had just been told I had cancer again… Uncle, I had decided on surgery, I had done what I thought was research, and knew the risks, so you are telling me there is another solution?
So I called Charles. He answered on the 3rd or 4th ring. He was expecting my call. I gave my stats 47, third generation, psa 3.9, gleason 3+3=6, 6 out of 13 biopys… that took about 45 seconds and then he started. You need to educate yourself more, prostate cancer is slow growth, talk to doctors, but more importantly talk to patients, do you want to wear a diaper the rest of your life? Do you want to impotent? There is a better procedure, and I just want you to explore it more. I had already decided on surgery, and I gave him, but I’m young, athletic, I’m the poster boy for the surgery (this term will come back to bite me in the ass a few days later) Lets just say for 30 minutes he made his case for me to spend a little more time and educate myself. He finished by saying he was going to send me a book. That I should read it and call him back. To text him my address, he would fed ex it and I’d probably get in on Monday, I could finish it in an evening. So after the call I called my uncle back, he continued to pressure me at the same time let me know that he is there for me during the whole process.
Side note, on Thursday my mom told him not to call me. He said, to hell with that, I’m calling him.
So by noon on Friday, I had spoken to my uncle twice, and Charles once. The rest of the day sucked, so much anxiety, oh and in the meantime I was working on two huge deals for our family company. How was I going to concentrate?
Surgery Time
So after meeting with the surgeon he had a date, Sept 3rd available, great, 6 weeks after my biopy’s the minimum wait time. So on Tuesday, I know in 3 weeks I’ll have the cancer out of me and onto the healing process. Before the surgery I will have to go to classes. One is an educational class that talks about the risks and side affects. 1. Loss of bladder control, I knew this and had accepted this could go on for a few weeks after surgery. 2. ED, yet, erectile dysfunction. But there are pills and shots (shots is what male adult actors use so they can work those long hours on sets). 3. Infection (always a risk with a surgery). 4. Blood clots… one of my past surgeries I had 4 PE’s, but they know my history, and take all the precautions, compression leggings, get me walking the day of the procedure, blood thinners. 5. Catheter for a week.
To me, I feel I could handle all of those (don’t want to do the PE thing again, but I know the symptoms now, and they have all the answers.) So by Thursday I had prepared my self for what was to come. I had come to peace, and honestly couldn’t wait to get started so I could start recovery.
I believe you...let's get it out.
Did I pee a lot? Yes, and I have my whole life. College swim meets I bet you I’d pee 7 or 8 times in a 3 hour period. During some of my best rounds of golf, I would pee almost every hole. Sex life, libido, not a problem. Because my father had it I was getting regular DRE’s (DRE's think of Fletch, "Using the whole fist their doc?") since I was 35. So now that I had it I’m the type to get the process underway and get it taken care of. I have seen too many people hold off treatment, whether it’s a knee replacement, or hip replacement, and by the time the get the procedure done, they have gotten so much older and weaker the recovery is that much harder. I’ve had enough surgeries to know there are always complications, there is always rehab, that is just the nature of the cure.
Thursday, August 29, 2019
Diagnosis
So after the biopsy’s I had to wait 8 days to go over them, and the doctor was wedging me in at 10:10 on August 1st to let me know the results. Um, yeah, sleep was hard. So two days before the appointment the time was changed to 11:00, why? I knew they were busy, my wife on the otherhand said uh oh, he wants time to speak with you, and yes, she was right. At 11:00 on August 1st I got the news that I had prostate cancer. That 6 of the 13 samples came back Gleason 3+3=6, grade 1.
I mentally went into a tunnel, my wife started asking the questions. She would be a better resource on what the doctor said, I thought I had done my research and I was going to demand robotic surgery to get it out so I could get on with my life. It was Thursday and we were scheduled to on a family vacation on Saturday. I told the doc, can we schedule next week, he said no, your rectum has to heal from the biopsy’s and the surgeon can’t meet with you until Tuesday August 13th after vacation. So off we went. At no point during this have I been in denial. I knew I would get it eventually, but not at 47.
As I look back, I bet I’ve had it for at least a year. Did I have a couple night sweats? Yes, but those were also the nights when the bourbon was delicious and I needed another, or the red wine was extra tasty and the wife and I were just having too much fun. After the appointment I started making the phone calls, my mother, my brothers, my close friends. I went to get lunch, did the Panera drive thru at Regency Square, got my food, and pulled into two or three empty parking spots as I’m making the phone calls, an old college roommate facetimed me, out of the blue, he was on a hike with his son, it was so bizarre. I did not have what it took to tell him at that time, my head was swirling.
Initial testing
On July 3rd, 2019 my doctor called the day after my annual exam and said my PSA was at 3.9, a spike since two years prior. My DRE was negative. I was given choices, 1. It could be an infection and I could go on antibiotics for a month, then retest, or because I’m active (I was currently swimming with a college swim team this summer 3 days a week, for 2 hours at a time) the antibiotic could weaken my tendons, 2. my father had passed away from Prostate cancer 5 years before after a 14 year battle, it was decided that I see a urologist. I was told to schedule an appointment with the Urologist and tell them I need to see someone soon because of “an elevated PSA”. So July 11th I met my Urologist. Once again I was given some options, wait, or we could schedule a biopsy. If you go with local numbing you can get it on schedule quicker, if you want to be put under, that will take longer to schedule. I chose the more aggressive choice, lets go local. So on July 24th, I found myself in a loose fitting sheet with no back, laying on my left side, while two nurses kept me laughing and one doctor shot what felt like rubber bands into my rectum… 13 times. During the process we talked about Dave Matthews, the doctor had just attended his first one, of course I had to tell him in the early 90’s while living in Richmond I used to go see him most Tuesday nights at Trak’s in Charlottesville, then see him again Wednesday nights in the flood zone. The summer of 93 I may have seen him 10 or twelve times over a two month period, and I hadn’t seen him live since New Years in Hampton in ’96. So after 10 to 15 minutes of mild grade school rubber band torture the waiting game began. And this is the when the anxiety started. My older brother said, just stay busy so you do not think about. Easy for him to say, for anyone who knows me my mind is always racing and going to strange and different places. For a good alright run of the mill time, sit in a room with me during a brainstorming session.
Why write this?
It’s easy to begin. 47 years of age, very active, husband, father, third generation prostate cancer patient. I’m writing this because in my research you just do not find stories of people in their 40’s facing this journey. Everyone who is “young” are in their upper 50’s and early 60’s. Or if they are in their 40’s maybe they are private people and just want to get on with their lives. Since I have it, it means my brothers are five times more likely to get it that other men, and my two sons now have an increased chance.
I'm writing this because, the more you talk about it, the more you learn you are not alone, and you do not have to be alone. Everyone is an expert, am I right? So many doors have opened up during my experience so far.
I writing this as the patient. I am not an expert by any means. If there is one thing you get out of this blog, it's that you have options, explore those options, push the envelope in researching to determine what is truly best for you.
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