Treated 2012 · Posted 2016
"My prostate cancer was aggressive. I had a rapidly increasing PSA and I was a Gleason 8." Read John Poltere's detailed account of his treatment. This is taken from a talk that he gives to prostate cancer support groups. He calls his presentation: "Prostate Cancer and Proton Therapy: What You Always Wanted to Know But Were Afraid to Ask."
I have prostate cancer just like you. Like some of you, I’m a Vietnam Vet; Agent Orange was “presumed” to have contributed to my prostate cancer.
At the end of April 2012, at the “young” age of 69, I was diagnosed with prostate cancer. And that was on top of having put down both of our pets during the previous two months. Stress-ville had arrived in my life. My PSA had increased rapidly from 4.0 to 6.4. A biopsy confirmed I had aggressive prostate cancer. My Gleason score was 4 + 4, rated as T2 cancer.
My urologist laid out all of the viable treatment options, and then proceeded to remove only one from the table – “Active Surveillance” was not an option due to the tumor’s location and my high Gleason score.
All other options were viable: Chemotherapy, surgery (including conventional, laparoscopic and robotic Di Vinci surgery), conventional radiation, IMRT and “seed” implants, and yes, even proton beam therapy.
My wife and I did a lot of research over the next few weeks. After learning all we could, we reduced my options to one – proton beam therapy IF I was a viable candidate.
I went through some testing, and finally confirmed my interview at Loma Linda University Cancer Center for June 5. In one of the many phone conversations with the nurse at LLUCC, she confirmed that my doctor wanted me to start the hormone therapy my urologist had initially recommended. Due to my high Gleason score, my protocol would include three different treatment types: Hormone therapy, proton therapy, and photon radiation. I began hormone therapy a few months before proton therapy.
The summer went fast, and we were able to squeeze in a Fall Color Cruise between my pod fitting (mid-September) and the beginning of proton treatment on October 10. Treatment would continue for 9 weeks.
After I began proton treatment, I found out that I was now an "official" member of the BOB (At LLUCC and some of the other proton centers, in order to protect the posterior (outside) wall of the rectum from radiation, a small, lubricated balloon is inserted into the rectum and inflated with water prior to each treatment. A secondary function of the balloon is to help immobilize the prostate, by pushing it up against the pelvic bone.).
Before I even began treatments, I discovered that this experience was much more than just receiving treatment for prostate cancer. The LLUCC program included as much support as I could digest. One example is this: All patients undergoing treatment wore a badge with their first name and their state of residence. As you mature in the program, you get colored dots and stars added to your badge showing your seniority. The colors go from green for attending orientation, to blue for “last week” of treatment. It's a great way to get to know fellow patients and learn from each other.
During my treatment, I talked to well over 100 patients and their spouses. I found it interesting that the vast majority had discovered proton beam without the help of their urologist. I also discovered that my new-found “sect” did NOT include anyone with an HMO for insurance. Not exactly statistically representative of middle aged males, eh?
Why no HMOs? They would not pay for the treatment as it was not at their own facility! And why so few urologists recommending proton therapy? I still don’t know the actual answer, but some participants told me that their doctor told them, “If you go for the proton therapy program, find yourself another doctor when you return.”
What ever happened to the Hippocratic Oath?
When you first start the protocol, you are fitted into your pod, which is a device that immobilizes you during the treatment. Picture a 7’ long piece of 24” PVC pipe, laid on its side with the top ½ it sheared away, and half circle plugs in each end. You lay down in the POD, separated from the PVC by plastic sheeting, and quick setting foam is injected between the PVC and the plastic sheet, making a mold of the lower half of your body.
This POD is used every time you get a treatment to make sure that you are in the same location relative to the pod every time you have the treatment. The beam from the proton gun is conformal; it hits only what it is aimed at. This way, it does minimal collateral damage to adjacent organs, glands or bones.
Here comes the balloon: A condom attached to 3’ plastic tube, attached to syringe.
First, you drink plenty of water to fill your bladder and lower stomach.
Then the balloon is inserted into your rectum, and about 4 oz. of water is injected into the balloon to inflate it, pressing the prostate into position against the other organs.
The balloon is repeated every time you have treatments.
You will get one treatment per day. You may schedule the treatment for any time of day. Mornings are best so that you can spend the rest of your day doing whatever you want.
It really is an amazing process! If you have a chance, take a tour of the LLUCC proton facility and you will see ALL that goes into your treatment! It is extraordinary.
Side effects? I've had some, but nothing close to what some who went through surgery have told me about.
I am still seeing my urologist semi-annually, although that will become annual visits this year.
Today, my PSA is still in the sub 1.0 area!